Podcasts about bloodfeed

Natalie joins Patrick and Amy to discuss how coronavirus is impacting holiday plans, the Affordable Care Act’s Open Enrollment period- closing December 15th- and actor Damian Washington joins to tell us about his multiple sclerosis YouTube channel NoStressMS and much more!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite DAMIAN WASHINGTON’s website: https://bit.ly/DWNoStress   ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar NHF’s Insurance Toolkit: https://bit.ly/32MufSs   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Policy experts Johanna Gray, a principal lobbyist representing the National Hemophilia Foundation (NHF), and Nathan Schaefer, NHF’s Vice President of Public Policy, join Amy and Patrick to discuss what the election results mean for bleeding disorders advocacy going forward. Plus, we pay tribute to beloved community advocate Donald “Ziggy” Douglas, who passed away suddenly earlier this week.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   LISTEN to BloodStream Journeys - https://bit.ly/BSJourneys ORDER a free BloodFeed! Calendar: https://bit.ly/BloodFeedCalendar   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20    

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 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    

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

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 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

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

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

This month on The BloodStream Podcast, we interview actress Alex Borstein who’s best known as the voice of Lois on “Family Guy.” Alex talks about her life as an entertainer, a symptomatic carrier and a hemo mom.  In our Like Segment, Natalie introduces us to the Feldenkrais Method and how it’s being used to manage chronic pain. In our Share Segment, New York City Hemophilia Chapter member Nicole Angeles shares her story of living with von Willebrand Disease, and some of the very challenging decisions it’s forced her to make. Patrick highlights Jonathan Cohn’s excellent HuffPost piece about the ousted Iowa teen with hemophilia whose insurance expense Wellmark Blue Cross Blue Shield explicitly cited to justify pulling out of the Iowa health care markets. What does this story tell us about the future of the Affordable Care Act? Find out now on Episode 18 of The BloodStream Podcast.   Exclusive Sponsor: Shire   Like Segment: The Feldenkrais Method and Chronic Pain    Share Segment: Nicole Angeles’ “VWD & Me.”   Comment Segment: An Iowa Teenager Didn’t Wreck His State’s Health Care Market. Here’s Who Did.   Alex Borstein Interview http://variety.com/2017/tv/news/the-marvelous-mrs-maisel-amazon-amy-sherman-palladino-albert-cheng-1202614481/ Other Links of Interest FDA’s announcement about "Hemlibra" Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com  

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

This month on The BloodStream Podcast, we spotlight “Factor Revolution”, BloodStream Media’s new three-part series covering the history of treatment in hemophilia; Natalie takes us through the five things all new moms need in our Like Segment; “Factor Revolution” Producers Ryan Gielen and Seth Kirschner introduce themselves and provide a window into their work in our Share Segment; Patrick highlights recent news related to medical marijuana/cannabis use for pain management; and finally sportswriter and hemo dad Dan Levy - perhaps better known as the dad of #IronMax - shares his perspective on media, awareness, and more! Listen now on Episode 17 of The BloodStream Podcast.   Exclusive Sponsor: Shire   Like Segment: Five things all new mothers need.   Share Segment: “Factor Revolution” Producers Ryan Gielen and Seth Kirschner share their experience of building relationships with the bleeding disorders community.   Comment Segment: Medical cannabis can help reduce our nation's pain epidemic || The Hill Why (some of) the GOP is Pushing for Medical Marijuana Research || Rolling Stonen Justice Department at Odds with DEA Over Marijuana Research. || Washington Post Sen. Hatch Introduces Medical Marijuana Research Bill || Orrin Hatch Campaign Website   Dan Levy Interview Marvel Honors Boy Fighting Hemophilia With Cameo in ‘Iron Man’ Comic | NBC Nightly News Inspiring America: Checking In On Real Life Super Hero Kid ‘Iron Max’ Hearts 4 Hemophilia Other Links of Interest Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com    

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

Andy Slavitt, the former head of Medicare, Medicaid, and the Affordable Care Act (ACA) under President Obama, joins us for a very special interview segment on the importance of the ACA for people with hemophilia. UK-based community advocate Laurence Woollard provides insight into the UK bleeding disorders community and his personal journey in hemophilia advocacy. Natalie leads a New York Times story on the debate surrounding how to price gene therapy treatments, and Patrick provides an overview of the recent, terrible news of a patient death during the Fitusrian clinical trial - what happened, what it means, and what happens next? Listen now on Episode 16 of The BloodStream Podcast.   Exclusive Sponsor for Episode 16: Shire   Like Share Comment Segments Like: NYT: New Gene-Therapy Treatments Will Carry Whopping Price Tags   Share: Laurence Woollard’s “The Endeavour to Progress”    Comment: Alnylam Suspends All Trials of Fitusiran After Hemophilia A Patient Dies in Phase 2 Study // Story from RareDr.com // Story from FierceBiotech   Andy Slavitt Interview JAMA Forum: Reforming Medicaid USA Today Column: Spare America a do-over on health care. Seize the bipartisan moment.   Other Links of Interest Clinical Trials 101 from HemAware Clinical Trials from the Hemophilia Federation of America Powering Through Podcast Ask The Expert Podcast Making-Of Bombardier Blood Video Stop The Bleeding! Season 7 - Behind The Story Videos Hope For Hemophilia   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com    

We preview National Hemophilia Foundation’s (NHF) 2017 Annual Meeting! Interviews include NHF CEO Val Bias, NHF staff and volunteers. During our Like, Share, Comment segment, Natalie and I discuss a recent article profiling companies with notably strong employee health benefits, a World Federation of Hemophilia (WFH) article highlighting recent success in their Twinning Program, and community member Tai-yan Chou-Kudu  presents Hemophilia - Not Just Physical, a spoken-word piece on severe hemophilia A’s impact on her life and studies. All of that, plus a look at a new inquiry in the UK into the blood contamination crisis. Listen now on Episode 15 of The BloodStream Podcast! Exclusive Sponsor for Episode 15: Like Share Comment Like: Nine Companies Hiring Now That Cover 100% of Employee Health Insurance Premiums Share: Tai-yan Chou-Kudu’s “Hemophilia - Not Just Physical” (LINK TO BLOG) Comment: Twinning successes in 2016, Inquiry to contaminated blood scandal in UK Other Links of Interest Powering Through Podcast Ep 7 feat. four HTC hematologists: http://bit.ly/PTpodEp7 Ask The Expert Podcast:  http://BloodStreamExpert.com The Haemophilia Society’s Blog: http://haemophilia.org.uk/blog/ Outreach and Identification in Indonesia video from the World Federation of Hemophilia’s Humanitarian Aid Program: http://bit.ly/WFHIndonesia Believe @ #NHF2017 Video: VIDEO NOT YET AVAILABLE. Believe @ #NHF2017 Printed Schedule: http://BelieveLTD.com/NHF2017 https://www.hepmag.com/article/coffee-cannabis-may-protect-liver-hiv-hcv   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com  

On this episode, Dr. Steven Pipe- pediatric hematologist and Chair of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council- provides an update on new and developing treatment products immediately following his attending the International Society on Thrombosis and Hemostasis (ISTH) Congress. Natalie leads a discussion on a recent CDC study that indicates opioid prescriptions are on the decline, Patrick initiates a game based on a new bleeding disorders online platform, and a community member shares her take on platelet disorders. All this and more on Episode 14 of The BloodStream Podcast!  Opioid Prescriptions Fall After 2010 Peak, C.D.C Report Finds https://www.nytimes.com/2017/07/06/health/opioid-painkillers-prescriptions-united-states.html Rare Platlet Disorders: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/types-of-bleeding-disorders/rare-platelet-disorders ISTH Congress 2017 Headlines: BioMarin and Spark: http://www.biopharmadive.com/news/hemophilia-ISTH-spark-alnylam-gene-therapy-biomarin/446849/    Idelvion: https://hemophilianewstoday.com/2017/07/14/hemophilia-b-pediatric-adult-patients-benefit-from-idelvion-studies-show/   Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors   Nuwiq: http://www.businesswire.com/news/home/20170709005080/en/ISTH-2017-Berlin-Octapharma-presents-exciting-Nuwiq%C2%AE Q&A with R&D chief of Bioverativ: https://www.dddmag.com/article/2017/07/bioverativ-r-d-chief-breaks-down-data-blood-disorder-drug-pipeline   Steven Pipe presents small molecule therapies: http://isthcongressdaily.org/novel-therapies-hemophilia-small-molecules-treatment-hemophilia/   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com