Podcasts about bloodstreamsc tunein

As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert!   Welcome to Episode 31 - or our In-Depth Look into MyBDC Episode- of the Ask The Expert Podcast!   Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities. For more information and to enroll in MyBDC, click the link: mybdc.hemophilia.org For specific questions email research@hemophilia.org The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes. All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created.  NHF has a newsletter, and research information is included. To sign up for the newsletter, visit www.hemophilia.org and scroll to the bottom of the page for the link. BloodFeed: https://www.bloodfeed.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

NHF’s 71st Bleeding Disorders Conference (BDC) is just weeks away, the stress of back-to-school season is in full effect, and might Tai Chi be, “An Ancient Remedy for Modern Times” that we all need?  Rick Starks says so! Nutrition consultant student Delisa O’Brien and Hong Kong-based singer/songwriter Kashy Keegan join the pod to talk about Sickle Cell Disease (SCD) and Charcot-Marie Tooth Disease (CMT), as September is an awareness month for both, and Spark Therapeutics Co-Founder & President Dr. Katherine High joins us to discuss her journey in gene therapy and the launch of TheScienceFair.org!  Plus, A Moment for Mental Health with Debbie and streaming recommendations from Mama Sue. All that, and more, on Episode 40 of The BloodStream Podcast.   Presenting Sponsor:  Takeda: http://bleedingdisorders.com   Segment Sponsors: Like Segment made possible by Genentech: https://www.youtube.com/challengeacceptedshow Share Segment made possible by Sanofi-Genzyme: https://www.juneforjointhealth.org/   Like Segment: How Stress Hits Women’s Brains Harder, from Prevention.com   Share Segment: Rick Starks’ An Ancient Remedy for Modern Times   Comment Segment: Sickle Cell Awareness Month CMT Awareness Month Kashy Keegan - The Best Is Yet To Come   A Moment For Mental Health Segment: National Suicide Prevention Hotline:  800-273-TALK Crisis Text Line:   Text CONNECT to 741741 Trevor Hotline:   866-488-7386 American Foundation of Suicide Prevention: www.afsp.org Debbie de la Riva’s Website Mental Health Matters Too Resource Guide Take a free of charge, private mental health screening here: https://www.mhanational.org/   Mama Sue’s Netflix Recs: Sharkwater Extinction Diagnosis Starbucks Unfiltered   Parting Shots: Believe @ NHF 2019: http://believeltd.com/nhf2019 + https://events.hemophilia.org/ehome/bleedingdisordersconference/program-at-a-glance/   Save One Life: https://saveonelife.net/   Subscribe and rate: The BloodStream Podcast on iTunes Listen to the latest: Ask The Expert Podcast Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com BloodFeed: www.bloodfeed.com The Science Fair: thesciencefair.org Bombardier Blood: bombardierblood.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

  Is a healthy joint an active joint or a stagnant joint? How many bleeds does it take to create damage? How does treatment adherence compliment our activity levels and joint health? Join us for the latest episode of Ask the Expert where nationally recognized physical therapist, Cindy Bailey, Ph.D, gives us the 101 on joint health, physical activity, and treatment adherence. Cindy is the director of physical therapy at the Los Angeles Orthopaedic Institute for Children and walks us through what defines joint health, how one bleed can create irreversible damage and the value of adhering to treatment regimens to stay active. Join us for a great Ask the Expert!   Welcome to Episode 29 - or our Does Treatment Adherence Mean Healthy Joints? Episode - of the Ask The Expert Podcast!     For more information about joint health and physical activity, check out these resources: Steps for Living: https://stepsforliving.hemophilia.org/step-up/treatment/treat-responsibly-today-for-a-healthy-tomorrow Hemophilia Federation of America: https://www.hemophiliafed.org/understanding-bleeding-disorders/complications/joint-damage/ World Federation of Hemophilia: http://elearning.wfh.org/elearning-centres/prophylaxis/ Bayer Announces  A Voluntary Recall of Two Lots of Kogenate FS: https://www.hemophilia.org/Newsroom/Medical-Advisories/Medical-Advisory-425-Bayer-Announces-a-Voluntary-Recall-of-Two-Lots-of-Kogenate-FS   “If you have better musculature around the joints, you will have fewer bleeds. ” -Cindy Bailey, Ph.D “Up to the ages of 8-11, you can repair cartilage damage by a bleed.”  - Cindy Bailey, Ph.D “Adherence is incredibly important because any amount of blood in the joint can cause deterioration” -Cindy Bailey, Ph.D     BloodFeed: https://www.bloodfeed.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, we breakdown “Clotting Factors: Aren’t They Basically All the Same?” from the May issue of  the Parent Empowerment Newsletter (PEN), we discuss one physician’s social media crusade to tear down “fake health news,” we listen to Tabitha White’s story of becoming a hemo mom after losing her hemophiliac father to AIDS, we interview European Haemophilia Consortium Chief Executive Officer Amanda Bok, and Debbie de la Riva leads the latest A Moment For Mental Health segment.  All that, and more, on Episode 37 of The BloodStream Podcast.  Presenting Sponsor Takeda: https://www.bleedingdisorders.com Segment Sponsors Like segment made possible by Sanofi Genzyme: https://www.sanofigenzyme.com/ Breaking Through!: breakingthroughhemophilia.com Empowering Women! https://www.bloodstreampod.com/empowering-women   Subscribe and rate The BloodStream Podcast on iTunes   Listen to latest Ask The Expert Podcast Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com Robert Cooper on BSpod Ep 34: http://bit.ly/RobertCooperBSpod   Like Segment This doctor is recruiting an army of medical experts to drown out fake health news on Instagram and Twitter   Share Segment Tabitha White’s “Positively Undefined.”   Comment Segment Clotting Factors: Aren’t They Basically All The Same?   A Moment For Mental Health Segment The National Institute of Mental Health   https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd/index.shtml   National Center for PTSD https://www.ptsd.va.gov/ Interview Segment Amanda Bok, CEO of European Haemophilia Consortium   Mama Sue’s Netflix Recs Green Book Your Inner Fish (Amazon) Life In The Dog House   Connect with BloodStream Media Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast we talk to Dr. Galen Cole about Cognitive Behavioral Therapy (CBT) and positive psychology, we hear Jeron Hill’s “My Personal Experience” story of living with hemophilia B, autism, and ADHD, and we discuss child anxiety and transitioning care into adulthood during our Like and Comment segments. Plus, the latest from A Moment For Mental Health and Mama Sue’s Netflix Recs! All that, and more, on Episode 36 of The BloodStream Podcast.   Presenting Sponsor - Takeda (https://www.bleedingdisorders.com/)   Segment Sponsors Stop The Bleeding! (stbhemo.com) Breaking Through! (breakingthroughhemophilia.com) The Teen Impact Awards (https://www.teenimpactawards.com/) Empowering Women (https://www.bloodstreampod.com/empowering-women)   Latest Ask The Expert Podcast   Leave us a review on iTunes:  Help others find BloodStream!   Like Segment: Child Anxiety May Factor Into Multiple School Absences   Share Segment: Jeron Hill’s “My Personal Experience”   Comment Segment: 6 Ways to Help Your Kid Move to Adult Care   A Moment For Mental Health Segment: Find a therapist in your area: https://www.psychologytoday.com/us   Interview Segment: Dr. Galen Cole BrainSpotting: www.brainspotting.com Ted’s trauma healing: https://youtu.be/S1CarDqVy2M EMDR for trauma: https://www.emdr.com/what-is-emdr/ Dr Cole’s books: http://galencole.com/portfolio_category/books/ Founder of CBT (David Burns) recent Ted talk: https://youtu.be/H1T5uMeYv9Q Top 25 CBT-relevant APPs: https://www.psycom.net/25-best-mental-health-apps   Mama Sue’s Netflix Recs:   The Highway Men The Mayo Clinic Secrets of Selfridges     BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui    

Empowerment isn’t something that appears out of thin air - it’s a culmination, an evolution. Our third and final episode shows how bringing women together and believing their stories leads to empowerment, which these women then spread to their families and communities back home. It illustrates how one well-crafted weekend of education, connection, and fun can shape the next twenty years. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

It's World Hemophilia Day and we're honoring our commitment to raise awareness around the world! Ryan Gielen (Believe Limited, Creative Director/Co-Founder & Bloodstream Media, Co-founder) brings you this special episode of Bloodstream. He sits down with the incredible artists, producers, and educators who craft and grow the projects of Believe Limited and Bloodstream Media including; FREE podcasts, FREE videos, and FREE events. Notice a theme? Everything we build for the bleeding disorders community is - and will always be - FREE! Keep listening to hear where to find these projects ... BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Far too often, women across the medical spectrum aren’t taken seriously by their doctors. This is particularly true within the bleeding and clotting disorders community. In this episode, we hear about the damage that’s done when women aren’t believed - and the powerful outcomes when they are. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

In 1999, an HTC outside Houston, TX created a retreat that focused exclusively on women with bleeding and clotting disorders in the Great Plains region. Twenty years later, it’s going stronger than ever. We start our 3-part series by exploring how these women were brought together, and the forces that have allowed this remarkable event to grow and thrive. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

This month on The BloodStream Podcast we discuss the questions to ask if you are considering participating in a clinical trial and how the US is struggling to think about gene therapy and rare disease drug pricing. Jonathan Hill shares his “A Long Road” story, Debbie de la Riva leads us through the first A Moment For Mental Health segment, and writer, producer, and “Unspeakable” creator Robert C. Cooper joins us for the interview.  All that and more on Episode 34 of The BloodStream Podcast.   Presenting Sponsor: Takeda Latest Ask The Expert Podcast Latest Powering Through Podcast Leave us a review on iTunes:  Help others from BloodStream! Like Segment: 6 Key Questions to Ask When Participating in a Clinical Trial from HemAware A Moment For Mental Health Segment: http://www.mentalhealthamerica.net/ Share Segment: Jonathan Hill’s “A Long Road” Interview Segment: Robert C. Cooper Official Website for “Unspeakable” Official Trailer for “Unspeakable” Comment Segment: Drugs that cost as much as a house are on the way to treat rare and devastating diseases. The US is scrambling to figure out how to pay for them   Mama Sue’s Netflix Recs: What The Health Prohibition (miniseries) Conversations with a Killer: The Ted Bundy Tapes BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui  

This month on The BloodStream Podcast, we discuss “KonMari-ing” your social media timeline and the case for the controversial gene editing technology CRISPR. We hear from entrepreneur Jimi Olgahere on overcoming sickle cell disease with sickle cell disease, and actor Katy Wright-Mead joins BloodStream to discuss the Sundance Film Festival premiere of sometimes, i think about dying, her new film portraying a young woman struggling with her mental health. All that and more on Episode 33 of The BloodStream Podcast.     Presenting Sponsor: Takeda   Latest Ask The Expert Podcast     Leave us a review on iTunes!  Help others from BloodStream!   Good News for Our Global Community Roche joins the WFH Humanitarian Aid Program Save One Life Adds Shipments of Life-Saving Medicine To Programs   Goodbye News In 60 Seconds: Dog Scams McDonald’s Customers Out Of Burgers By Pretending To Be A Stray NBA trade news and rumors: As deadline nears, Anthony Davis to Lakers talks look dead 170 Foxes Are Rescued From Fur Farm and Given New Home at a Buddhist Monastery   Like Segment: The Secret to Actually Enjoying Your Timeline: The KonMari Timeline   Share Segment: Overcoming Sickle Cell with Sickle Cell ; Jimi Olghere speaks during Powering Through @ NHF’s Bleeding Disorders Conference 2017   Comment Segment: The Case For CRISPR Babies   Interview Segment: sometimes, i think about dying: Official Website   Mama Sue’s Netflix Recs: The Making of the Mob: Chicago 9 Months That Made You Downton Abbey   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Clive Smith and the UK Haemophilia Society provide an update on the inquiry into the UK’s Contaminated Blood Scandal, Amy Board joins to discuss her new role with Ask The Expert and Believe Limited, Natalie discusses a recent article on how to “invest” in your health, Patrick recaps a the HemAware story on New York Rangers Coach Dan Quinn, and we introduce a new segment: Mama Sue’s Netflix Recs. All that and more on Episode 32 of The BloodStream Podcast!   Presenting Sponsor: Shire   Latest Ask The Expert Podcast   Latest Powering Through Podcast   Leave us a review on iTunes!  Help others from BloodStream!   Community News In 60 Seconds: Hepatitis C Virus Is Major Predictor of Liver Cancer in Hemophilia, U.S. Inpatient Data Reveals BIVV001 Increases Half-life of Factor VIII in People with Severe Hemophilia A, Phase 1/2a Trial Shows Novoeight Safe, Effective in Hemophilia A Patients Over Long Term, Phase 3b Trial Shows Preventive Use of Idelvion Lets Kids with Hemophilia B Need Fewer Infusions, Trial Shows Catalyst Announces Updates on Two Lead Compounds for Hemophilia Like Segment: The Right Way to Invest in Your Health   Comment Segment: New York Rangers Coach David Quinn on Hockey and Hemophilia   Interview Segment: Amy Board, the new host of Ask The Expert!   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Natalie brings you a 2018 year in review, highlighting some of BloodStream’s greatest moments from the past year.  All that- plus Believe Limited’s creative director Ryan Gielen hosts an interview with several teens who participated in the Breaking Through! Musical Theater Intensive in New York City- and more, on episode 31 of the BloodStream Podcast!   Exclusive Sponsor: Shire Latest Ask The Expert Podcast: Latest Powering Through Podcast: TeenImpactAwards.com BombardierBlood.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream!   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Patrick brings you to New England Hemophilia Association’s (NEHA) FallFest to learn about “Current and Emerging Therapies in Hemophilia Care,” and to highlight presentations on the Teen Impact Awards, Stop The Bleeding!, and Bombardier Blood during NEHA’s FallFest. All that- plus a new Share segment from NHF’s Nikole Scappe- and more, on episode 30 of the BloodStream Podcast! Exclusive Sponsor: Shire Latest Ask The Expert Podcast: Ep. 20: Women with Bleeding Disorders - w/ Tammy Davenport - October 29, 2018 Latest Powering Through Podcast: Ep. 22 - Colorado w/ Cathy Bombardier, Lacey Jay Henderson and Seth Rojhani CHECK IT OUT! TeenImpactAwards.com BombardierBlood.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream!   Share Segment: Leave Your Fingerprint by Nikole Scappe   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Natalie records from the National Hemophilia Foundation’s 70th Annual Bleeding Disorders Conference, bringing highlights, small interviews and generally providing the flavor of this year’s annual meeting. In addition to conference coverage, this month we also hear from community member Ben Martin in our Share segment. All that and more on Episode 29 of The BloodStream Podcast!   Exclusive Sponsor: Shire   Latest Ask The Expert Podcast:  Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018 Latest Powering Through Podcast:  Ep. 21 - NorCal w/ Lauren Barbounis & Jeremy Dodson TeenImpactAwards.com   TeenImpactAwards.com   BombardierBlood.com   STBhemo.com (Stop The Bleeding!)   Leave us a review on iTunes!  Help others from BloodStream!   Welcome to the Club by Ben Martin   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, the National Hemophilia Foundation’s (NHF) CEO Val Bias and SVP Dawn Rotellini preview NHF’s 70th Annual Bleeding Disorders Conference taking place October 11th-13th in Orlando, Florida.  UK Haemophilia Society trustee Clive Smith shares his Ironman story, Natalie leads a discussion on wearables and health outcomes, and Patrick walks through the recent The Atlantic article on hemophilia and gene therapy titled: The Patients Who Don’t Want To Be Cured. All that and more on Episode 28 of The BloodStream Podcast! Exclusive Sponsor: Shire Believe @ #NHF2018: BelieveLTD.com/NHF2018 Latest Ask The Expert Podcast: Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018 Latest Powering Through Podcast: Ep. 20 - NEHA w/ Dr. Jonathan Bernstein, Dr. Stacy Croteau, Emily Bisson, & Caitlin Montcrieff CHECK IT OUT! TeenImpactAwards.com BombardierBlood.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream! Community News In 60 Seconds: 11-YEAR-OLD WITH RARE BLEEDING DISORDER BAKES ONE-OF-A-KIND CAKES FOR OTHER SICK KIDS Hemophilia Center of Western New York awards $890,000 grant to UB to address shortage of specialists in non-malignant blood disorder uniQure (QURE) Reports First Patient Treated in Dose-Confirmation Study of AMT-061 in Patients with Hemophilia B IDELVION® 3500 IU Vials Now Available to Provide Convenience to Patients Catalyst Biosciences Announces Publication of Marzeptacog Alfa (Activated) Phase 1 Data in The Journal of Thrombosis and Haemostasis Promising Data Supports Development of AAVhu37-based Gene Therapy for Hemophilia A   Like Segment: Fitness trackers turn health into a game that users rarely win ‘Beyond the Wrist: Rethinking Wearable Technology for Mental Health Share Segment: Clive Smith - Iron Out The Obstacles Comment Segment: The Patients Who Don’t Want To Be Cured Interview Segment: NHF CEO Val Bias and SVP Dawn Rotellini Preview NHF BDC 2018   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

 This month on The BloodStream Podcast, Shari Luckey shares her “Living in the Shadows with Mild Hemophilia” story, Natalie presents an article on the things you need to know before purchasing CBD oil, we bring to you updates on the legal dispute between Roche/Genentech, and we hear from participants and organizers of the Wheels For The World Barry Haarde Memorial Bike Ride. All that and more on Episode 27 of The BloodStream Podcast!   Exclusive Sponsor: Shire   Latest Ask The Expert Podcast: Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018 Latest Powering Through Podcast: Ep. 19 - Idaho w/ Preston Bowling, Skyler Openshaw, & Allie Cashel   TeenImpactAwards.com   BreakingThroughHemophilia.com   STBhemo.com (Stop The Bleeding!)   Leave us a review on iTunes!  Help others from BloodStream!   Community News In 60 Seconds Like Segment: Before You Buy CBD Oil Online, Ask These Questions   Share Segment: Shari Luckey - “Living in the shadows with Mild Hemophilia” Comment Segment: Update on Shire Injunction Filing on Roche/Genentech Court Rules on Shire/Roche Preliminary Injunction   Interview Segment: Laurie Kelley BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, community member Lidia Ruiz shares her “An Unexpected Blessing” story, Natalie presents an article on the Step Therapy bill headed to Rhode Island’s state house, we highlight ASH, ISTH, NHF, and WFH’s collaboration in developing clinical practice guidelines for VWD and expectant mom, Rebecca Haber, shares with us how her pregnancy led to discovering that she has Hemophilia C (Factor XI deficiency) in this month’s Interview Segment. All that and more on Episode 26 of The BloodStream Podcast! Exclusive Sponsor: Shire Latest Ask The Expert Podcast: Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018 Latest Powering Through Podcast: Ep. 18 - Florida w/ Lilliam Bervis, Bobby Monohan, & Allie Cashel TeenImpactAwards.com BreakingThroughHemophilia.com STBhemo.com (Stop The Bleeding!) Leave us a review on iTunes!  Help others from BloodStream! Community News In 60 Seconds: Does CRISPR cause cancer? Developing Inhibitors Inflates Treatment Costs and Impairs Quality of Life, Study Finds New Canadian study to improve eradication of inhibitors in Hemophilia A patients) uniQure Enrolls First Patient in Phase III HOPE-B Pivotal Study of AMT-061 in Patients with Hemophilia B) NHS England greenlights hemophilia drug CHMP recommends EU marketing authorization for Veyvondi® [vonicog alfa, recombinant von Willebrand factor] for adults with von willebrand disease] Hemophilia Drug Development Summit Takes Aim at Hurdles Facing New and Upcoming Treatments Oxidation of FVIII Increases Immune Response in Hemophilia A Mouse Model, Study Finds) Like Segment: 'Step Therapy' Bill Headed to RI State House // Stand Against Step Therapy: http://www.steptherapy.com/ Share Segment: Lidia Ruiz - An Unexpected Blessing Comment Segment: NHF, WFH, ISTH, and ASH to collaborate on clinical practice guidelines for von willebrand disease. Help Inform Guidelines for VWD Diagnosis and Care BetterYouKnow.org Interview Segment: Rebecca Haber BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on BloodStream, we review major takeaways from World Federation of Hemophilia’s 2018 World Congress, Dakota Rosenfelt shares his journey of life with hemophilia, and we speak with Lisa Thibeault, the nurse coordinator from the Southeastern Ontario Regional Inherited Bleeding Disorders Program in Ontario, Canada, about the progress made in the treatment of women with bleeding disorders. All that and more on Episode 25 of The BloodStream Podcast! Exclusive Sponsor: Shire World Federation of Hemophilia 2018 World Congress World Congress Daily Recaps FDA Clears way for gene therapy BioMarin presents data on BMN 270 Bayer presents insights on HemACTIVE study Novo Nordisk presents data on Rebinyn and presents study data on NovoEight CSL Behring Supports patient advocacy groups through LEAD Program Octapharma presents data on SubQ-8 and presents data on Nuwiq UniQure presents data their AAV5 gene therapy program Bioverativ (a Sanofi company) presents preliminary data for BIVV001 Shire presents data on rVWF in the treatment of people with VWD National Hemophilia Foundation’s Dawn Rotellini elected to WFH’s Board of Directors. Genentech/Roche received Priority Review from the FDA for Hemlibra in Hem A patients without inhibitors. coreHEM publishes Core Outcome Set for Hemophilia Clinical Trials Spark and Pfizer present data on SPK-9001 and the modified process New study looks at Von Willebrand Disease, Von Willebrand Factor, and Aging   Latest Ask The Expert Podcast: Episode 15 featuring Shari Luckey.  Latest Powering Through Podcast: Episode 17 featuring Vanessa Flora, Jason Flora, and Heather Stephenson Share Segment: Dakota Rosenfelt - A Prescription for Success Interview Segment: Lisa Thibeault, RN - Let’s Talk Period, from Queen’s University + partners   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Day 5 from WFH's 2018 World Congress is in the books, as is the 2018 Congress itself!  What a few days it's been.  We spend a few minutes reviewing today and capsuling the conference before saying goodbye from Glasgow! During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. Follow Along: #WFH2018 WFH's Congress News Daily. Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Day 4 from WFH's 2018 World Congress is in the books, and The BloodStream Podcast daily recap is ready! During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. Follow Along: #WFH2018 Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Special guest Laurence Woollard from the UK joins The BloodStream Podcast for Day 3 of the World Federation of Hemophilia's World 2018 Congress! During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. Follow Along: #WFH2018 Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui Read more at http://bloodstream.libsyn.com/wfh-world-congress-day-2-recap?tdest_id=394637#PUDeY18LOFqdFlpE.99

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. Follow Along: #WFH2018 Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Nabila Husseni from Gujarat, India shares her story of living with Factor V deficiency and championing women’s equality, Natalie presents a recent NBC story on the rise of depression, we discuss Takeda’s acquisition of Shire, and Hope For Hemophilia founder Jonathan James joins us for the Interview Segment. All that and more on Episode 24 of The BloodStream Podcast! Exclusive Sponsor: Shire Latest Ask The Expert Podcast: Episode 14 - Physical Therapy  Latest Powering Through Podcast: Episode 16 - HANY's Family Education Conference Like Segment: Major depression on the rise among everyone, new data shows // Depression Symptoms   Share Segment: Nabila Husseni- Strength Comment Segment: Japan's Takeda clinches $62 billion Shire Deal Interview Segment: Hope for Hemophilia   Community News in 60 Seconds: Hemlibra Named a Breakthrough Therapy for Hemophilia A Without Inhibitors On World Hemophilia Day, Bioverativ Shares Success Stories from the Developing World CRISPR “One Shot" Cell Therapy for Hemophilia Developed Gene-Editing Study in Monkeys Sets Stage for Further HIV Cure Research Gene Therapy Injected Into Dog Muscle Fares Well in Hemophilia B Study Hemophilia therapy could be first drug with $1M price tag: 3 things to know Seattle Plans to Build an AIDS Memorial Called The AMP   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. #WFH2018 Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Dr. Steven Pipe joins us to discuss Hemlibra, the recently reported patient deaths, and what this means for our community. FDNY Lieutenant, CVS pharmacist, and FEMA volunteer Bill Patsakos joins us to discuss accounting for the bleeding disorders community during disaster relief, and advocate Maryann May shares her #ibleedtoo story. All that and more on Episode 23 of The BloodStream Podcast! Exclusive Sponsor: Shire Like Segment: What Is Floating?  Sensory Deprivation Benefits // Floatation Locations Share Segment: Maryann May - #ibleedtoo  Comment Segment: National Hemophilia Foundation: Statement From Genentech Regarding Hemlibra Interview Segment: Eyewitness To Destruction from LA Kelley Communications Community News in 60 Seconds: The Ambrosio family of the New York City Hemophilia Chapter celebrated their 10th annual benefit fundraiser CSL Plasma Introduced Miguel Angel Jiminez to children with hemophilia during a PGA Champions Tour event Scientists in Australia have identified a gene-control mechanism that enables some individuals to produce a fetal form of hemoglobin, offsetting the severity of certain blood diseases Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors BioMarin Wins Award for Getting Gene Therapy Facility Operational Ahead of Time Many Hemophilia B Patients Have Pain, Depression and Overall Poor Health, Study Finds New Method May Improve Delivery of Targeted Gene Therapies    BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, community member Kevin Krivosik shares his journey toward independence, Camp Casey Founder Molly Reeser joins us to share the camp’s mission and her inspiration for starting it, and we take a look a recent Forbes Magazine piece highlighting one of the many challenges in mental health treatment. And using a combination of written statements, audio recordings, and his own original writing, we say goodbye to community leader Barry Haarde. All that and more on Episode 22 on The BloodStream Podcast!   Exclusive Sponsor: Shire   Hemophilia and Young Adulthood, a new podcast series: BloodLinePod.com   Bleeding Disorders Awareness Month: RedTieCampagin.org   Like Segment: Psychiatrist Shortage Escalates As U.S. Mental Health Needs Grow   Share Segment: Kevin Krivosik - “Third Time’s a Charm” Comment Segment/Remembering Barry Haarde: Remembering the Rain: Barry Haarde   Interview Segment: Camp Casey Founder Molly Reeser   Community News in 60 Seconds: Patient Advocacy Groups Worldwide Plan Events Marking Rare Disease Day (Feb 28) The National Heart, Lung, and Blood Institute to host workshop on Factor VIII Inhibitors May 15-16 in Bethesda, Md.   The UK’s First Genome-Editing Study Is Underway with Phase ½ on SB-FIX   Hemlibra receives approval in Europe   Adynovate receive approval in South Korea   Eloctate show “promise” for use in immune tolerance induction (ITI) therapy.   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while travelling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!   Exclusive Sponsor: Shire Remembering Barry Haarde: Powering Through HFA 2016 Like Segment: How to Fit in Exercise While You Travel   Share Segment: Hannah Lutz - Type Three Girl    Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients   Interview Segment: Michael Hargett’s NewHeart4Mike.com website   Community News in 60 Seconds: Registration for NHF’s Washington Days Registration for NHF’s Bleeding Disorders Conference Patient Access Network Foundation Opens Hemophilia Patient Assistance Fund Hemophilia Puts Damper on Patient’s Sex Life and Health Status, Study Reports My Life, Our Future to be Featured in CDC Public Health Webinar NORD Launches 7,000 Mile Rare Movement Rebinyn Now Available for the Treatment of Hemophilia B Sanofi, Facing Threat From Generics, Moves to Buy Hemophilia Drug Makers (Bioverativ) Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A (with Inhibitors) Shire Granted European Union Marketing Authorization for Adynovi   Parting Shots: #EAHAD2018 on Twitter   Other Links of Interest Project CALLS from Hemophilia Federation of America HTCtour.org- Stop The Bleeding’s Guided Tour of a Hemophilia Treatment Center BloodStreamMedia.com Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

This month on The BloodStream Podcast, Shire and Roche are locked up in a legal dispute related to Hemlibra, what does this mean and will it impact patients’ ability to receive Hemlibra? We discuss in today’s Comment Segment. A New York Times article examines why the United States spends so much more money on healthcare than any other country in a story presented by Natalie in our Like Segment, and entrepreneur and hemo dad Mark Kenny shares his compelling story and perspective during our Share Segment. Plus Natalie and I sit down with hemo mom (and Patrick’s mom!) Susan Lynch to get her perspective of being introduced to hemophilia in the mid-1980’s and how she navigated being a single parent of two kids with hemophilia during the advent of recombinant products and prophylaxis. All that and more on this Episode 20 of The BloodStream Podcast! Exclusive Sponsor: Shire Like Segment:  Why the US spends so much more money on other nation’s than Healthcare. Share Segment: Mark Kenny: Entrepreneur and Hemo Dad  Comment Segment: Shire and Roche locked in legal dispute over Hemlibra. Links: From Biopharma Dive, “Shire looks to stall Hemlibra impact with court injunction” From Reuters, “Roche, Shire court fight escalates over haemophilia drug” From Shire, “Shire Files Preliminary Injunction Against Roche to Protect Its Intellectual Property”   Parting Shots: Syria allows some patients to leave besieged area Von Willebrand Disease in Dogs: Symptoms, Causes, & Treatments Woman awarded £9m damages for care of son who 'should not have been born'   Other Links of Interest World Federation of Hemophilia’s Government Support in Armenia Chris Bombardier’s Adventures of a Hemophiliac Facebook Page Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

This month on The BloodStream Podcast, Hemlibra is FDA approved and the first non-factor replacement therapy to treat people with hemophilia A (and inhibitors) is now on the market, we’ll discuss that along with other major product development takeaways from the American Society of Hematology’s Annual Meeting held earlier this month during our Comment Segment. Natalie will present a story on how new HIV guidelines are revolutionizing patients lives in the Like Segment, and Community Member Angel Parrett shares her story of living with Factor 1 deficiency in today’s Share Segment. Plus, Patrick sits down with National Hemophilia Foundation CEO Val Bias to review some of the major community highlights from 2017, and to look ahead at what’s to come in 2018. All that and more on Episode 19 of The BloodStream Podcast. Exclusive Sponsor: Shire Like Segment: ‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives. Share Segment: Angel Parrett: One In A Million: Factor 1 Deficiency  Comment Segment: Hemlibra is FDA Approved & Major Takeaways from #ASH17 Hemlibra is FDA approved for adult and pediatric patients with severe hemophilia A and inhibitors. AAV5-Factor VIII Gene Transfer in Severe Hemophilia A Why Spark Therapeutics Stock Dropped Following #ASH17 Gene Therapy Nearly Eliminates Hemophilia B Bleeding Episodes, Trial Shows Shire, Rani Therapeutics Collaborate on Pill to Treat Hemophilia A. Guy Young, MD, on Recent Revolutions in Hemophilia Treatment   Other Links of Interest Patrick discussing hemophilia and Gene Therapy on BBC’s Open Source (Interview starts at 46:50) Powering Through Podcast Ask The Expert Podcast TreatmentForAll.org Stop The Bleeding! - "Mental Health, or HoCheeCo"   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project."  Exclusive Sponsor for The Factor Revolution: Shire LINKS: - ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**) - JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD” - HEMOPHILIA FEDERATION OF AMERICA (HFA): “1970s: Living with Hemophilia” “Medical Bullentin #7 Chapter Advisory #8” “1982—AIDS Discovered Among Patients with Hemophilia” “1980’s: Hemophilia, HIV/AIDS, and Hepatitis C” - HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment” - AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”   - NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders” - NBC's Earliest Report on AIDS 1982 - ABC News Nightline AIDS - 12/17/1982 - 1982 - 1992 News Clips On HIV/AIDS (The First Ten Years) - BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A” - WORLD FEDERATION OF HEMOPHILIA (WFH) “The Tragic History of AIDS in the Hemophilia Population, 1982-1984” “Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A” - THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making” - CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations” - HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White” - LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.” - GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children” - PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard INTERVIEWS: Bobby Wiseman (via the HIV Story Project) - Board Member of Hemophilia Council of California Carl Weixler (via the HIV Story Project) - Board of Directors for and President of the Committee of Ten Thousand Dana Francis (via the HIV Story Project) - The clinical social worker with the Adult Hemophilia Treatment Team at UCSF Glenn Pierce (via the HIV Story Project) - Medical and Scientific Advisory Council (MASAC) for NHF; Previously served as president of the Board of NHF Jeanne White-Ginder (via the HIV Story Project) - Serves on the advisory board of The AIDS Institute; Advocate & Mother of Ryan White Louise & Clifford Ray (via the HIV Story Project) - Advocates & Parents of Ricky Ray Mark Skinner - Former President of NHF and WFH; Current member of the Federal Advisory Committee on Blood Safety Michelle Rice - Senior VP of external affairs for the National Hemophilia Foundation Randy Curtis - President of the Hemophilia Council of California Val Bias (via the HIV Story Project) - CEO of NHF Dana Kuhn - President and founder of Patient Services Incorporated Sue Geraghty - Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center Various interviews from the film Bad Blood. LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC US Federal Govt Statistics & Timeline, HIV.Gov National Institutes of Health (NIH) Huffington Post Top Books on HIV AIDS Ryan White Care Act Connect with BloodStream: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodFeed: https://www.bloodfeed.com Powering Through Podcast: http://poweringthrough.org/podcast Ask The Expert Podcast: http://bloodstreamexpert.com Email mailbag@bloodstreammedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project."  Episode 2: The Contamination Crisis pulls together first-hand accounts from survivors of the HIV/AIDS outbreak, often referred to in our community as "the contamination crisis." This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood.  Exclusive Sponsor for The Factor Revolution: Shire LINKS: - ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**) - JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD” - HEMOPHILIA FEDERATION OF AMERICA (HFA): “1970s: Living with Hemophilia” “Medical Bullentin #7 Chapter Advisory #8” “1982—AIDS Discovered Among Patients with Hemophilia” “1980’s: Hemophilia, HIV/AIDS, and Hepatitis C” - HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment” - AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”   - NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders” - NBC's Earliest Report on AIDS 1982 - ABC News Nightline AIDS - 12/17/1982 - 1982 - 1992 News Clips On HIV/AIDS (The First Ten Years) - BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A” - WORLD FEDERATION OF HEMOPHILIA (WFH) “The Tragic History of AIDS in the Hemophilia Population, 1982-1984” “Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A” - THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making” - CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations” - HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White” - LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.” - GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children” - PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard INTERVIEWS: Bobby Wiseman (via the HIV Story Project) - Board Member of Hemophilia Council of California Carl Weixler (via the HIV Story Project) - Board of Directors for and President of the Committee of Ten Thousand Dana Francis (via the HIV Story Project) - The clinical social worker with the Adult Hemophilia Treatment Team at UCSF Glenn Pierce (via the HIV Story Project) - Medical and Scientific Advisory Council (MASAC) for NHF; Previously served as president of the Board of NHF Jeanne White-Ginder (via the HIV Story Project) - Serves on the advisory board of The AIDS Institute; Advocate & Mother of Ryan White Louise & Clifford Ray (via the HIV Story Project) - Advocates & Parents of Ricky Ray Mark Skinner - Former President of NHF and WFH; Current member of the Federal Advisory Committee on Blood Safety Michelle Rice - Senior VP of external affairs for the National Hemophilia Foundation Randy Curtis - President of the Hemophilia Council of California Val Bias (via the HIV Story Project) - CEO of NHF Dana Kuhn - President and founder of Patient Services Incorporated Sue Geraghty - Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center Various interviews from the film Bad Blood. LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC US Federal Govt Statistics & Timeline, HIV.Gov National Institutes of Health (NIH) Huffington Post Top Books on HIV AIDS Ryan White Care Act Connect with BloodStream: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodFeed: https://www.bloodfeed.com Powering Through Podcast: http://poweringthrough.org/podcast Ask The Expert Podcast: http://bloodstreamexpert.com Email mailbag@bloodstreammedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

BloodStream Media is proud to present The Factor Revolution. The last sixty years in hemophilia treatment, with over forty interviews from community members, doctors, and advocates. We take a deep look at the history of factor treatment in the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project".  Exclusive Sponsor for The Factor Revolution: Shire ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**) ENCYCLOPEDIA.COM - “Hemophilia Throughout History” JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD” HEMOPHILIA FEDERATION OF AMERICA (HFA) “1970s: Living with Hemophilia” “Medical Bullentin #7 Chapter Advisory #8” “1982—AIDS Discovered Among Patients with Hemophilia” “1980’s: Hemophilia, HIV/AIDS, and Hepatitis C” HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment” AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”   NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders” NBC's Earliest Report on AIDS 1982 ABC News Nightline AIDS - 12/17/1982 1982 - 1992 News Clips On HIV/AIDS (The First Ten Years) BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A” WORLD FEDERATION OF HEMOPHILIA (WFH) “The Tragic History of AIDS in the Hemophilia Population, 1982-1984” “Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A” THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making” CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations” HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White” LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.” GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children” PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard INTERVIEWS: Bobby Wiseman (via the HIV Story Project) Board Member of Hemophilia Council of California Carl Weixler (via the HIV Story Project) Board of Directors for and President of the Committee of Ten Thousand Dana Francis (via the HIV Story Project) The clinical social worker with the Adult Hemophilia Treatment Team at UCSF Glenn Pierce (via the HIV Story Project) Medical and Scientific Advisory Council (MASAC) for NHF Previously served as president of the Board of NHF Jeanne White-Ginder (via the HIV Story Project) Serves on the advisory board of The AIDS Institute Advocate & Mother of Ryan White Louise & Clifford Ray (via the HIV Story Project) Advocates & Parents of Ricky Ray Mark Skinner Former President of NHF and WFH Current member of the Federal Advisory Committee on Blood Safety Michelle Rice Senior VP of external affairs for the National Hemophilia Foundation Randy Curtis President of the Hemophilia Council of California Val Bias (via the HIV Story Project) CEO of NHF Dana Kuhn President and founder of Patient Services Incorporated Sue Geraghty Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center Various interviews from Bad Blood. LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC US Federal Govt Statistics & Timeline, HIV.Gov National Institutes of Health (NIH) Huffington Post Top Books on HIV AIDS Ryan White Care Act   Connect with BloodStream: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodFeed: https://www.bloodfeed.com Powering Through Podcast: http://poweringthrough.org/podcast Ask The Expert Podcast: http://bloodstreamexpert.com Email mailbag@bloodstreammedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

Description: In this episode, Patrick & Natalie discuss a recent study highlighting the issue of patient aging, a story about a young Iowan with hemophilia whose healthcare costs recently made national waves, and the latest on the American Health Care Act. Plus, our hosts sit down for an in-person interview of Believe Limited’s own Rob Bradford, recently back from spending 47 days at Mount Everest base camp filming and managing footage for Bombardier Blood, the documentary on Chris Bombardier’s historic summiting of the world's tallest mountain! All this and more on Episode 13 of BloodStream! Click "Episodes" above to stream or download. Sponsors for Episode 13: Presenting Sponsor: Shire Link to BleedingDisorders.com     Like Share Comment: Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article. Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016). Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign    Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay  

  In this episode, Patrick and the BloodStream team celebrate the first year of the BloodStream podcast! Patrick leads us through this "Year In Review" episode by bringing us your favorite sequences from the past year of episodes. Listen to fan-favorite and milestone moments of the first year and remind yourself of all the things you learned. All this and more on Episode 12 of BloodStream! Click "Episodes" above to stream or download.   Sponsors for Episode 12: Supporting Sponsor: Shire Link to BleedingDisorders.com   Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

   The BloodStream Podcast - Episode 11 - Program Notes   Listen to Episode 11 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):   iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay   Description: In this episode, Patrick and Natalie celebrate World Hemophilia Day with two special segments: an interview recap with Patrick of Believe Limited's recent trip to Nepal for production on Bombardier Blood and a mashup of soundbites and interview clips from Believe's production on the World Federation of Hemophilia's Treatment for All web series. All that, plus a few special announcements and a brief recap of Hemophilia Federation of America's Annual Symposium on Episode 11 of The BloodStream Podcast!   The BloodStream Podcast is sponsored exclusively by Shire. Learn more about Shire in the bleeding disorders community: Link.   Program Notes: Learn more about World Hemophilia Day from the World Federation of Hemophilia (WFH): Link Check out Stop The Bleeding!’s Season 7 launch w/ their a World Hemophilia Day special episode: Link. Listen to BloodStream Media’s new Von Willebrand Disease podcast series from BloodLine: Link. Check out Hemophilia Federation of America’s website for more on the 2017 and 2018 Symposiums: Link.   Special Segments Learn more about Chris Bombardier’s historic climb of Mount Everest as well as Bombardier Blood, the documentary film being produced about it: Link. Watch all 10 episodes of WFH’s Treatment for All web series and learn more about their Humanitarian Aid Program: Link. Contact BloodStream Media: Got an idea for a future segment, or a question for Ask The Expert? Email us: mailbag@bloodstreammedia.com.   BloodStream Media on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram.   Subscribe to The BloodStream Podcast: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay  

Description: In this episode- it's Bleeding Disorders Awareness Month! Patrick and Natalie discuss that, Washington Days, the landmark opening of the My Life, Our Future research repository, and more! Also, Australian community member Jenna Lovell gives her take on life w/ vWD, and Mainer Justin Levesque discusses photography, hemophilia, Iceland, and much more during a wide-ranging Sit-Down conversation with Patrick. All this and more on Episode 10 of The BloodStream Podcast!   Sponsors for Episode 10: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website Supporting Sponsor: Shire Link to BleedingDisorders.com   Trending Topics: EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link) FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link) Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link) LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) HFA 2017 Policy & Government Relations Internship (Link) New and Improved Blood Brotherhood Forum from HFA (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) Like Share Comment: Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article. Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016). Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign    Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

  Description: In this episode, Patrick and Natalie review some advocacy best practices, take a look at the increasingly popular cryotherapy, share one mom's (anonymous) story of addiction, hemophilia and family, and during the Sit-Down segment, Patrick speaks with NHF board member Jorge de la Riva about how NHF's board works, his views on health and social advocacy, and his family's personal story of being introduced to hemophilia. All this and more on Episode 9 of BloodStream! Click "Episodes" above to stream or download.   Sponsors for Episode 8: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website Supporting Sponsor: Shire Link to BleedingDisorders.com   Trending Topics: EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link) FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link) Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link) LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) HFA 2017 Policy & Government Relations Internship (Link) New and Improved Blood Brotherhood Forum from HFA (Link) Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link) Like Share Comment: Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link to Article. Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link to Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016). Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link to Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign   Sit-Down Segment with NHF Board Member Jorge de la Riva Jorge on Twitter Link   Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay  

In this episode, Patrick & Natalie review recent headlines of interest, introduce a patient perspective on life with sickle cell disease, discuss Believe Limited's upcoming documentary about hemophiliac mountaineer Chris Bombardier's summiting of Mount Everest, and discuss football, finance, and five tips toward improving money management during the Sit-Down segment with special guest Josh Gordy, NFL Super Bowl champion turned financial coach. All this and more on Episode 8 of BloodStream!   Sponsors for Episode 8: Presenting Sponsor: Stop The Bleeding! (STB!). Link to STB! Website. Supporting Sponsor: Shire. Link to BleedingDisorders.com.   Contact BloodStream: Submit a question for our Ask The Expert series (premiering 1/30) by emailing mailbag@bloodstreampod.com.   Trending Topics: Registration is now open for: National Hemophilia Foundation (NHF) hosted Washington Days (March 8th-10th). Link Hemophilia Federation of America’s (HFA) 2017 Symposium (April 6th-9th). Link NHF’s 2017 Annual Meeting (August 24th-26th). Link The FDA announces a Class 1 recall from Nurse Assist Inc of Normal Saline Flush syringes. Link Steps-For-Living outlines Exercise and Activity Options for people with bleeding disorders. Link NBC Nightly News catches up with “Iron Max.” Link NHF survey seeking men with hemophilia age 50 or older. Link   Like Share Comment:     Meditation may help alleviate chronic pain, study shows. Link Meditation App: Headspace. Link Delisa O’Brien’s tumblr on diet, health, and sickle cell disease. Link Mt. Everest climb by severe hemophiliac Chris Bombardier is the subject of new Believe LTD documentary. Link   Sit-Down Segment with NFL Super Bowl Champion Josh Gordy Josh Gordy’s Freedom Financial Coaching Website. Link Freedom Financial Coaching Facebook Page. Link Dave Ramsey Financial Coaching Website. Link Josh on Twitter. Link   BloodStream on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram.   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

In this episode, Patrick reviews some recent headlines in our Trending Topics segment, shares some takeaways from the American Society of Hematology’s 2016 Annual Meeting during our Like, Share, Comment segment, and during a special Sit-Down segment, we hear from with Executive Directors of patient organizations and chapters from around the country on what 2016 was, and what 2017 could be. The good, bad and otherwise. All this and more on Episode 7 of BloodStream. Sponsors for Episode 7: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC Website Trending Topics: Hemophilia News Today publishes articles on “Pain and pain management in hemophilia.” Link. DailyMail.com reports on, “How a blood test could save you [UK Women] from infertility.” Link Blood Journal publishes, “Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India.” Link MASAC publishes four new recommendations. Link Like Share Comment:     My Life, Our Future (MLOF) reaches 5,000 patients enrolled. Link MLOF website: Link Video on MLOF: Link American Society of Hematology (ASH) Headlines of Interest: Alnylam Pharmaceuticals presents interim results from study of investigational, subcutaneously-administered fitusiran (for patients with hemophilia A or B who also have inhibitors). Link CSL Behring presents Phase III trial results from IDELVION (long-acting recombinant product for hemophilia B). Link Novo Nordisk presents data from SMART-7 study of NovoSeven. Link Sanagmo BioSciences presents data from SB-525, a gene therapy treatment currently being studied in mice and non-human primates. Link Spark Therapeutics presents preliminary results from investigational, gene therapy agent SPK-9001 intended for the treatment of people with hemophilia B. Link University of Pennsylvania scientists successfully cure mice with hemophilia B using CRISPR. Link Octapharma announces two clinical trials studying how Wilate may be used to treat people with hemophilia A. Link World AIDS Day at the National AIDS Memorial Grove Honors the Hemophilia Community. Video of Powering Through panel featuring NHF CEO Val Bias, HFA CEO Kimberly Haugstad, COTT President Carl Weixler, and The Grove’s ED John Cunningham. Link NHF CEO Val Bias letter regarding HIV/AIDS Memorial. Link   Sit-Down Segment: Jeremy Griffin, from the New York City Hemophilia Chapter Rich Pezzillo, from the New England Hemophilia Chapter Michelle Kim, from the Southern California Hemophilia Chapter Bob Robinson, from the Bleeding Disorders Alliance of Illinois BloodStream on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram.   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

In Episode 6, Patrick introduces a new BloodStream co-host, touches on some headlines of interest in our Trending Topics segment, dives into what the recent election may mean for the bleeding disorders community in our Like, Share, Comment segment, and discusses disabilities, entertainment, and the importance of partnership with Ali Stroker, the first Broadway performer who uses a wheelchair. All this and more on Episode 6 of BloodStream! Sponsors for Episode 6: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website. Supporting Sponsor: Entertainment to Affect Change (E2AC!) Link to STB! website. Trending Topics: Save One Life Celebrates Its 15th Anniversary. SaveOneLife.net / Story On Gala. The American Society of Hematology’s (ASH) Annual Meeting takes place December 3rd - 6th in San Diego, California. hematology.org. The Hemophilia Federation of America’s Blood Sisterhood Program Launches The Sisterhood App for Women with Bleeding Disorders. Sisterhood in the iTunes App Store. Paralyzed Monkey Walks Again. NPR Story. Should I Trust Wikipedia With My Health? NPR Article.   Like, Share, Comment Segment:     Blood Clots Dent Hopes for Hemophilia Drug Emicizumab. Link Hemophilia News Today’s Article On Emicizumab Data from World Congress. Link YogaWorks Website. Link HFA Responds to Election: We Are Always Here For You. Link NHF Addresses Your Post-Election Health Questions. Link Special Guest: Ali Stroker Ali Stroker, Official Website. Link Deaf West Theatre. Link BloodStream on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

In Episode 5, we take a look at recent community news during our Trending Topics Segment- including a new virtual reality game designed to help reduce kids’ anxiety during infusions and a new needle that won’t cause bleeding after it’s removed, and we take a deeper dive into three stories during our Like, Share, Comment Segment. This month we also feature my Sit Down with the iconic HIV/AIDS and hemophilia advocate Jeanne White-Ginder. All that and more, on episode 5 of BloodStream! Sponsors for Episode 5: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website. Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC website. Trending Topics: The National Hemophilia Foundation launches a new series of educational webinars. Link Nationwide Children’s Hospital in Ohio is piloting a virtual reality game designed to help reduce anxiety and stress in pediatric infusions. Link Genetic Linkage Analysis may lead to a simple way to diagnose women carrying the gene causing hemophilia A.  Link (Story) Link (Study) A self-sealing hemostatic needle that won’t cause bleeding when removed from a vein. Link Two tools for patient reported outcomes address the need for personalization of outcomes Link. Like, Share, Comment Segment:     HFA Gears For Good Riders raise $130,000 for Helping Hands. Link Barry Haarde completes his fifth trans-con bike ride, totaling 5,000 miles and raising over $52,000. Link Alex Dowsett, the professional cyclist with hemophilia, launches Little Bleeders charity to encourage fitness and athletics for children with bleeding disorders. Link Colorado’s Kyle Haas rides 500 miles through mountain passes. Link Sleep resources curated and posted to The BloodStream Blog. HIV now “undetectable” in British man. Link Why talk of HIV cure is premature (from BBC). Link Why it’s too soon to say HIV has been cured (from PopSci). Link amfAR - statistics on young people and HIV (Link) and the US and HIV (Link) The Sit Down: USA Today’s Top 25 people (1982 - 2007). Link The AIDS Memorial Grove. Link The HIV Story Project. Link Surviving Voices, a collaboration between the HIV Story Project and The Grove. Link BloodStream on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay

Description In Episode 4, we take a look at recent community news during our Headlines Segment- including updates regarding the Zika virus, community advocacy efforts, and data collection, and we take a deeper dive into three stories- including one on zombies!- during our Like, Share, & Comment Segment. This month we also feature a Special Interview Segment! Made possible by our Presenting Sponsor NCHS, our Special Interview Segment features great moments from Powering Through, a nationwide speaker series on obstacles and challenges, and includes soundbites from community members and inspiring friends such as: Cross-country cyclist Barry Haarde Blues musician, Patrick Droney NFL Superbowl Champion Josh Gordy HIV/AIDS activist, Jeanne White-Ginder And many more! Sponsors: Presenting Sponsor: NCHS. Link to NCHS's website. Supporting Sponsor: Stop The Bleeding! (STB!) Link to STB! website. Powering Through: Powering Through Website. Link to PoweringThrough.org. Headlines Stories: Plasma Protein Therapeutics Association (PPTA)'s Statement on Zika: Link Food and Drug Administration's Revised Guidance on Zika: Link Hemophilia News Today on Universal Case Report Form (U-CRF): Link World Federation of Hemophilia's (WFH) Page on U-CRF: Link Josh Gordy Educational Scholarship, 2016 Winners: Link Josh Gordy H.O.P.E. Foundation: Link Hemophilia Federation of America's (HFA) Premium Assistance Information (HR3742): Link National Hemophilia Foundation's (NHF) Washington Days Fact Sheet: Link Honoring Jeanne M Lusher, MD, Pioneer in Hemophilia: Link Dr. Jeanne Lusher's Wikipedia page: Link Like, Share & Comment Segment     Kid Captain: Kinzie Hemann. Link HFA's Dear Addy Piece on Mental Health and Insurance. Link MentalHealth.gov's Health Insurance Page. Link Downtown Devil piece on the Zombie Walk. Link Phoenix New Times piece on the Zombie Walk. Link Arizona Hemophilia Association's Info & Registration Page for the Zombie Walk: Link Powering Through Powering Through Official Website. Link Powering Through YouTube Playlist. Link BloodStream on Social BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram. Subscribe & Listen to BloodStream on any of these platforms: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay