Podcasts about ask the expert podcast

Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert interviews, because they’re not going away! Listen in with Patrick and Amy as they share the new and exciting things coming from Bloodstream Media! Welcome to Episode 40, or To the Future! The final episode of the Ask The Expert Podcast!    Check out all the podcast offerings from Bloodstream Media: https://www.bloodstreammedia.com/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned from treating patients, his interests in the global disparity of care, and his thoughts of the Michael Jordan documentary, The Last Dance! Join us to get to know Dr. Valentino a little better! Welcome to Episode 39 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058    

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding disorder community. Dr. Valentino shares how NHF is addressing the current COVID pandemic, NHF’s national research agenda, and how COVID could impact the shift in treatment in hemophilia. We’ll also chat about the Bleeding Disorder Conference going virtual this year, so join us for a can’t miss episode of Ask the Expert! Welcome to Episode 39 - or our Dr. Valentino Episode - of the Ask The Expert Podcast!  Check out the weekly webinar series provided by the National Hemophilia Foundation here: The National Hemophilia Foundation: https://www.hemophilia.org/ Register for the virtual Bleeding Disorder Conference here: https://events.hemophilia.org/ehome/bleedingdisordersconference/about/?&_ga=2.12224756.1785968952.1589565712-1855623951.1578586058  

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask the Expert! Welcome to Episode 38 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going forward and how increased communication with NHF sets both organizations up for success. Join us for another great episode of Ask the Expert! Welcome to Episode 38 - or our Meet Sharon Meyers Episode - of the Ask The Expert Podcast!  Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isolated from his friends. How did he manage and why did he think it was important for other teens to share their story? Check out this great episode and if you know an amazing teen affected by a bleeding disorder doing incredible things for their community, nominate them for the Teen Impact Award at www.teenimpactawards.com  Welcome to Episode 37 Part 2- or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/  

So much of our community programming and education is focused around teenagers and yet oftentimes our teenagers seem like mysteries to us. What is it like being a teen with a bleeding disorder and what would make their lives easier? To celebrate Bleeding Disorders Awareness Month we asked teen, Brian Ragaishis, to join us on Ask the Expert to share why he created Live Smart, Play Smart, a website that creates community for other teens affected by bleeding disorders by telling their story. Brian, a former Teen Impact Award winner, joins us to share how the idea was born and why it was so important to connect with his peers. A unique episode of Ask the Expert! Welcome to Episode 37 - or our Live Smart, Play Smart Episode - of the Ask The Expert Podcast!  Check out the following resources mentioned in our episode: Nominate a teen for the Teen Impact Awards: https://www.teenimpactawards.com/ Apply for the Adam Lynch Scholarship here: https://www.teenimpactawards.com/scholarship To learn more about Live Smart, Play Smart and share your story: https://www.livesmartplaysmart.com/ To learn more about Bleeding Disorders Awareness Month and how you can contribute: https://redtiecampaign.org/  

In our first month of Ask the Expert’s new format we welcome you to our extended conversation with Dr. Jonathan Roberts, a hematologist with the Bleeding and Clotting Disorders Institute. In this bonus episode, we continue our conversation with Dr. Roberts where we learn how growing up with hemophilia led him to a passion for science and later on, medical school. We’ll hear his thoughts on what it has been like to be a physician and a patient during this paradigm shift in treatment for hemophilia and his thoughts about getting into the medical field for those interested in science. Join us as we get to know more of Dr. Roberts personal story! Welcome to Episode 36 - or our Get to Know the Expert - of the Ask The Expert Podcast!    Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.org

Growing up with hemophilia shaped how Dr. Jonathan Roberts encourages his patients every day. As the Associate Medical Director of the Bleeding and Clotting Disorder Institute, Dr. Roberts as had the opportunity to give back to the community he is personally connected to. Join us for a unique Ask the Expert with Dr. Roberts as he shares his thoughts on future treatments for hemophilia, his research on creating a better assay for von Willebrands diagnosis, and his passion for encouraging patients to become their own experts on their healthcare. A must listen for the bleeding disorder community! Welcome to Episode 36 - Part 1 - of the Ask The Expert Podcast!  Check out the following resources Dr. Roberts mentioned for more information: The Importance of HTC Care: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/hemophilia-treatment-centers Find Your Local Chapter: https://www.hemophilia.org/Community-Resources/Chapter-Directory National Hemophilia Foundation: www.hemophilia.org 

As we begin the new year many of us are encouraged to follow through on goals we have set for ourselves, but the stress involved with sticking to it and following through can affect our mental and emotional well-being. Debbie de la Riva from Mental Health Matters Too stops by to share some things to keep in mind about creating actual habit and behavior change as we work towards our goals. As a community leader encouraging awareness and education around mental health, Debbie will also share what we can expect in 2020 and her growing partnership with Believe Limited and the National Hemophilia Foundation. Start your new year off right and join us for another terrific episode of Ask the Expert!   Welcome to Episode 35 - or our New Year’s Resolutions Watch-Out’s Episode - of the Ask The Expert Podcast!    Program Notes: Check out the following resources for more information: Mental Health Matters Too Website: http://mentalhealthmatterstoo.com/ Resource Guide: http://mentalhealthmatterstoo.com/resources/ The Power of Habit by Charles Duhigg  

von Willebrand disease is the most common bleeding disorder affecting 1% of our population and yet, it is the most unknown. Research for von Willebrand disease (vWD) continues to be elusive for patients and physicians alike causing frustration and emotional toil for those affected. On this episode of Ask the Expert, we welcome vWD hematologist and researcher, Dr. Christopher Ng M.D., from the University of Colorado Hemophilia and Thrombosis Center to share the latest from the medical community on diagnosis procedures, treatment, and the emotional struggle patients and their families experience as they search for concrete answers to their symptoms. Dr. Ng answers questions from our listeners with a thoughtful and compassionate approach to a complex disorder. Join us for a special episode of Ask the Expert developed for our vWD community! Welcome to Episode 34 - or our vWD Research Update Episode - of the Ask The Expert Podcast!  There are several national conferences for von Willebrand patients and their caregivers, as well as online resources. Check out the following resources for more information: Foundation for Women & Girl with Blood Disorders http://www.fwgbd.org/ NOW (National Outreach for von Willebrand) Conference - National conference for von Willebrand’s disease hosted by the Arizona Hemophilia Association: https://www.arizonahemophilia.org/now/ Victory for Women: https://victoryforwomen.org/ vWD Connect Foundation, hosts a national conference for vWD Type 3 every year: https://vwdconnect.org/ National Hemophilia Foundation hosts a vWD track at the National Conference: https://www.hemophilia.org/   “An accurate vWD diagnosis could take multiple times because it can be affected by patient stress, heavy exercise or inflammation.” Dr. Christopher Ng, M.D.   “vWD researchers are looking beyond just levels - they are looking at other genetic makeup that could affect bleeding.” Dr. Christopher Ng, M.D.   “vWD and platelets work together as a team to start the clotting process - you need both and they are hard to tell apart. .” Dr. Christopher Ng, M.D.   

As we enter into a new phase of hemophilia treatments and products, the questions continue to grow and become more complicated by the day. Check out the latest episode of Ask the Expert, where we welcome Dr. Michael Wang, M.D. from the University of Colorado Hemophilia and Thrombosis center to discuss the current status of revolutionary potential treatments like gene therapy and non-factor replacements. Dr. Wang answers listeners own questions about the clinical trial process, research updates, what the medical community is encouraged about, as well as concerns being raised. In this true paradigm shift in how we view hemophilia treatment, the only consistent message from all sides as been - educate yourself and keep asking questions. Join us for a can’t miss episode of Ask the Expert!   Welcome to Episode 33 - or our Paradigm Shift in Hemophilia Treatment Episode - of the Ask The Expert Podcast!  ‍ For the latest in clinical trial outcomes follow the National Hemophilia Foundation https://www.hemophilia.org/ ‍ “Strong gene therapy candidates are encouraged to have meticulous logging skills and the availability to be seen every week for a period of time.” Dr. Michael Wang, M.D.   “The future will be about individualized choice based on lifestyle and the type of protection you want in a treatment.” Dr. Michael Wang, M.D.   “We will begin to understand mild/moderate patients in depth going forward because of the treatment shift due to sheer volume.” Dr. Michael Wang, M.D. 

Patrick shares moments from DISORDER: The Rare Disease Film Festival, author & advocate Cazandra Campos-MacDonald joins to discuss her new book Dear Hemophilia, we discuss Open Enrollment’s closing on December 15th, provide you a first-hand account of living with depression during A Moment for Mental Health, hear entertainment recs from Mama Sue, and more, on Episode 42 of The BloodStream Podcast.   Subscribe to and rate The BloodStream Podcast Subscribe to and rate The Ask The Expert Podcast   Presenting Sponsor:  Takeda:  http://bleedingdisorders.com   Segment Sponsor: Like Segment made possible by Genentech: https://www.youtube.com/challengeacceptedshow   Open Enrollment Closes Dec 15 Learn more and sign up www.healthcare.gov HFA’s Open Enrollment Guide http://bit.ly/OpenEnroll20   DISORDER: The Rare Disease Film Festival Official Website https://www.rarediseasefilmfestival.com/   Cynthia Wade (Beyond Blue) http://www.cynthiawade.com/   Kyle Anne Grendys (Fraser Syndrome & Me) https://filmfreeway.com/FraserSyndromeandMe   Interview Segment: Cazandra Campos-MacDonald - Dear Hemophilia https://cazandracmacdonald.com/   A Moment For Mental Health Segment: Okay, I’ll admit it: I’m depressed. http://www.patrickjameslynch.com/blog/2018/5/19/okay-ill-admit-it-im-depressed   Support Groups National Alliance On Mental Illness www.nami.org Depression and Bipolar Support Alliance www.dbsalliance.org   Mama Sue’s Streaming Recs: Modern Love Tell Me Who I Am 90 Day Fiance   Subscribe to and rate The BloodStream Podcast Subscribe to and rate The Ask The Expert Podcast   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org  

Imagine doing your due diligence for an upcoming medical procedure by double checking your facility and providers are in-network with your insurance plan, only to later find out that a provider treating you (e.g., an anesthesiologist or radiologist) does not participate in your health plan’s network after you receive a huge out-of-network bill out of nowhere. This is one example of a healthcare issue known as “surprise billing” and it could cost you and your family thousands of dollars. Ask the Expert joins HFA Director of Policy, Miriam Goldstein, to break the issue down for our understanding and explains potential solutions Washington is debating to fix this issue. Also joining us is HFA Director of Advocacy, Sonji Wilkes, a community member who faced this issue firsthand when her son was born and recently shared her story with Congress. A can’t-miss episode of Ask the Expert for all our rare disease advocates! Welcome to Episode 32 - or our Surprise Billing 101 Episode - of the Ask The Expert Podcast!    If you receive a bill from an out-of-network provider for planned procedure or have further questions about surprise billing, contact HFA through their website: www.hemophiliafed.org    If you have been experiencing issues with your insurance company, HFA wants to hear your story! Project CALLS [Creating Alternatives to Limiting and Lacking Services] is an opportunity for you to share your story and help the entire bleeding disorders community. HFA collects stories from across the country, collates the data, identifies trends, and uses the information to help policymakers and providers better understand and meet the needs of our community.   Participate here: https://www.hemophiliafed.org/for-patient-families/navigate-insurance/project-calls/    “Surprise medical bills can arise in an emergency when the patient has no ability to select the emergency room, treating physicians, or ambulance providers.” - Miriam Goldstein, HFA Director of Policy   “Unexpected medical bills, including surprise medical bills, lead the list of expenses most Americans worry they would not be able to afford.” -Miriam Goldstein, HFA Director of Policy   “Don’t be discouraged, patients will always have the louder voice. Our job is to tell decision makers, this issue matters to me. It’s up to us.” - Sonji Wilkes, HFA Director of Advocacy    

Natalie interviews attendees of NHF’s 71st Bleeding Disorders Conference, Amy & Debbie recap a mental health session from the conference, and we preview a brand new podcast series featuring an incredible community story from Vanessa Flora.  Then, DISORDER: The Rare Disease Film Festival co-founder Daniel DeFabio joins Patrick to preview the 2019 festival and its films! All that, plus, safety updates from NHF & HFA, streaming recs from Mama Sue, and more on Episode 41 of The BloodStream Podcast. Presenting Sponsor:  Takeda:  http://bleedingdisorders.com   Segment Sponsor: Genentech: https://www.youtube.com/challengeacceptedshow (Like Segment)   Safety News Genentech Issues Statement on Hemlibra Particles; MASAC Responds (10/7) NHF and HFA’s Joint Letter on Product Safety (10/1)   Interview Segment: DISORDER: The Rare Disease Film Festival: https://www.rarediseasefilmfestival.com/   A Moment For Mental Health Segment: Counseling The Wingmen Foundation www.wingmenfoundation.org Better Help www.betterhelp.com   Support Groups National Alliance On Mental Illness www.nami.org Depression and Bipolar Support Alliance www.dbsalliance.org   Mama Sue’s Streaming Recs: Diet Fiction For The Birds Downton Abbey (the movie!)   Subscribe to and rate The BloodStream Podcast Subscribe to and rate The Ask The Expert Podcast   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org  

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

Hemophilia Foundation of Michigan’s Camp Bold Eagle is turning 50 this year! Camp Bold Eagle is the longest running summer camp for kids and teens with bleeding disorders in the United States and to celebrate this incredible accomplishment and to relish in the joy of summer camp, Ask the Expert invited staff of the Hemophilia Foundation of Michigan to join us as they reminisce about the history of camp, the amazing leadership that is developed at camp and share the evolution of Camp Bold Eagle. Whether you are a parent struggling with sending your child to camp for the first time or a seasoned camper that can’t wait to see your friends next summer, join us for a conversation about the history of bleeding disorder camps and unique power camp has to foster independence in all of us.   Welcome to Episode 30 - or our Summer Camp Special! Episode - of the Ask The Expert Podcast!     Find a bleeding disorder camp in your area: Hemophilia Federation of America Camp Directory National Hemophilia Foundation Camp Directory   “The concept back then was to see what they could do rather than couldn’t do.“ -Sue Lerch “Many chronic disease camps are designed to forget about disease, but hemophilia camp was designed to engage with the disorder to develop independence.” -Sue Lerch “Camp is not about the place - it’s about the people.” - Tim Wicks      

Is gun control a healthcare issue?  Why is CBD everywhere? What new assistive device did Patrick buy?  We discuss it all, plus, Association for Healthcare Social Media Founder and President Dr. Austin Chiang joins to discuss his mission, Debbie de la Riva’s back to talk about National Suicide Prevention Month, and Mama Sue helps us wind down with her latest streaming recommendations. All that, plus a community share from Meredith Meyers- and so much more- on Episode 39 of The BloodStream Podcast.   Presenting Sponsor:  Takeda.  Visit http://bleedingdisorders.com to learn more.   Segment Sponsors “Like Segment” made possible by Genentech: https://www.youtube.com/challengeacceptedshow   Subscribe and rate The BloodStream Podcast in Apple Podcasts   Listen to latest Ask The Expert Podcast   Show Notes Housekeeping BloodStream Media: bloodstreammedia.com Stop The Bleeding!: stbhemo.com The Science Fair: thesciencefair.org   Like Segment What’s the Deal with CBD Oil?   Share Segment Meredith Meyers’s First of His Kind  Comment Segment Is Gun Control A Health Care Issue?   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   Interview Segment w/ Dr. Austin Chiang Association for Healthcare Social Media   Mama Sue’s Netflix Recs In The Dark Father Brown Is Sugar The New Fat?   Parting Shots Two women in Chicago are naming all the generic drugs Whistler, Canada   Connect with BloodStream Media Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter

  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 host Natalie infuses host/husband Patrick for the first time, on mic (and video)!  Listen to the discussion around first infusions, infusion anxieties, and more on our Special Infusion Segment. A new Mental Health Resource Guide is the focus of our Moment For Mental Health Segment with Debbia de la Riva; headlines out of ISTH will come during our Comment Segment; “Is Medicare’s position on pain management changing?” is the central question of our Like Segment, and Ivon Giron shares his powerful Finding My Purpose piece during our Community Share Segment.  All that, plus Mama Sue, Parting Shots, and so much more on Episode 38 of The BloodStream Podcast.   Presenting Sponsor:  Takeda.  Visit http://bleedingdisorders.com to learn more.   Segment Sponsors “Like Segment” made possible by Genentech: https://www.youtube.com/challengeacceptedshow “Share Segment” made possible by Sanofi Genzyme: https://www.sanofigenzyme.com/   Subscribe and rate The BloodStream Podcast in Apple Podcasts   Listen to latest Ask The Expert Podcast     BloodStream Media: bloodstreammedia.com Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com Bombardier Blood: bombardierblood.com The Science Fair: thesciencefair.org   Like Segment Medicare weighs whether to pay for acupuncture.   Share Segment Ivan Giron’s Finding My Purpose   Comment Segment ISTH Congress Daily ISTH Academy App #ISTH2019 on Twitter   A Moment For Mental Health Segment Debbie de la Riva’s Website Mental Health Matters Too Resource Guide   Infusion Segment Nat & Pat’s First Infusion Video:  https://bit.ly/2XJymxP   Mama Sue’s Netflix Recs Exhibit A The Royal Bird Brain   Connect with BloodStream Media Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter  

Did you know that women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms? Or that, on average, it takes women ten years to be diagnosed with endometriosis? On the latest episode of Ask the Expert, we dive into this topic and the long history of women feeling dismissed or ignored when it comes to their health. We are joined by Christie VanHorne, a consultant with CVH Consulting, who has developed training modules to demystify gender bias in healthcare. Christie walks us through the tools of how to identify gender bias, what is best when we relate to doctors and clinical staff when trying to have our voices heard, and most importantly, she reminds us that this is a cultural systemic issue. A great listen for the bleeding disorder community!   Welcome to Episode 28 - or our Gender Bias in Healthcare 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. Follow and contact Christie on her website and social channels to learn more and get a gender bias training in your area! web: cvhconsultingllc.com email: christie@cvhconsultingllc.com Insta: cvhconsulting LinkedIn: Christie VanHorne, M.Ed, MPH FB: CVH Consulting, LLC   “Women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms” -Christie VanHorne “Our genetics determine how we manifest disease and yet medicine is not research to differentiate.”  - Christie VanHorne “It is so hard to defeat the stereotype “it’s all in their heads” -Christie VanHorne “Let’s shift our mindset towards seeing our doctors as partners in our care. They need us. We know when something is wrong.” -Christie VanHorne   Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

The latest episode of Ask the Expert features a conversation with Danna Merritt, a chronic disease social worker with over 50 years experience counseling parents of a child with a serious medical condition. Danna is creator and founder of Parents Empowering Parents (PEP), a decades long parenting program for the bleeding disorder community and Energizing and Empowering Minds, a non-profit with the mission of helping parents be parents, and kids be kids, in spite of their medical challenges. With her wealth of experience and a strong grasp of child development, Danna is the perfect expert mind to discuss the nuances of parenting. Danna answers real listener questions and shares tangible skills that parents can utilize. Listen in for a wonderful conversation has we celebrate the joys and struggles of parenting. Welcome to Episode 27 - or our Parenting episode - of the Ask The Expert Podcast!   Follow the link below to follow Danna’s non-profit Energizing and Empowering Minds and to connect to other parents in your area: https://eeminds.org/   Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.  Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

Are you considering board service with your local chapter or a national organization? Maybe you are currently serving on a board and know the unique struggle this volunteer position can face. Join us for a special Ask the Expert episode as we sit down with Jorge de la Riva, former board chair of The National Hemophilia Foundation. Jorge shares his personal views of the role of a board member and how serving your community in this way can be rewarding for you and your family. “The best way to find yourself is to lose yourself in the service of others” - Gandhi. Welcome to Episode 26 - or our The Value of Board Service Episode - of the Ask The Expert Podcast!     Follow the link below for continued resources on board service: https://boardsource.org/    “The best thing a new board member can do is listen.” “The Board Chair/President is there to serve the community and staff, while execited the will of the board.” “A solid working relationship between the CEO/executive director and the board chair is based on aligned values, transparency and clear directives from the board.” Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

This month on The BloodStream Podcast we talk to Dr. Assad Haffar and Dr. Glenn Pierce from the World Federation of Hemophilia about World Hemophilia Day, we hear Molly Livingtone’s “Raising Kids with Hemophilia in Israel” story, Debbie de la Riva returns for our “A Moment for Mental Health Segment,” Natalie and Patrick discuss miscarriages and men as well as Canada’s troubled history with Medicare-For-All during the Like and Comment segments, and Mama Sue returns for the latest streaming recs!  All that and more on Episode 35 of The BloodStream Podcast.    Presenting Sponsor - Takeda (https://www.bleedingdisorders.com/)   Segment Sponsors Stop The Bleeding! (stbhemo.com) The Ask The Expert Podcast (bloodstreamexpert.com) BloodLine’s VWD Series (https://www.bloodlinepod.com/episodes) The Teen Impact Awards (https://www.teenimpactawards.com/) Breaking Through! (breakingthroughhemophilia.com)   For more information about the new Emotional Health Outreach Program from The Wingmen Foundation: https://www.wingmenfoundation.org/the-emotional-health-outreach-program/   Latest Ask The Expert Podcast: http://www.bloodstreamexpert.com/episodes   Leave us a review on iTunes:  Help others find BloodStream!   Show Notes: Like Segment: We Need To Talk About Miscarriages And Men   Share Segment: Molly Livingstone “Raising Kids With Hemophilia In Israel”    Comment Segment: The doctor’s strike that nearly killed Canada’s Medicare-For-All plan, explained.   A Moment For Mental Health Segment: Find a therapist in your area: https://www.psychologytoday.com/us   Interview Segment: Dr. Assad Haffar & Dr. Glenn Pierce Official Website for WFH’s World Hemophilia Day Recognition Official Website for WFH’s Humanitarian Aid Program   Mama Sue’s Netflix Recs:   Stink! Dawn of Humanity Amanda Knox     Standard Connect & Subscribe links…

Ever wonder what happens after you meet with a legislator and their staff? Ever wonder what they do with your courageous, compelling stories? Can you actually affect policy changes by advocating? Do your stories even matter? Join us for a special episode of Ask the Expert as we pull back the curtain on the legislative process! This month our guest is Bruce Barnum, a former staffer to Senator Al Franken. Bruce gives a glimpse of what it is like working for a congressional office, the importance of telling your story and how policy is informed by YOU! This is your chance to see that your voices truly matter. A can’t miss episode of Ask the Expert! Welcome to Episode 25 - or our Do Our Stories Actually Matter Episode - of the Ask The Expert Podcast!     Follow the link below to find out who represents you in Congress: https://whoismyrepresentative.com/   Additional Resources: To find contact information for your local district offices, go to your member’s website and find what office is closest to your home. Ask to meet with the member when they are back in town. Make sure to tell the staff what you’d like to discuss and have a flexible time-frame for the best chance of getting a meeting.   Follow the links below to see NHF and HFA’s policy positions: https://www.hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Priorities https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/policy-priorities/  

  Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!   Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!     Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you    Follow the link below to read about specific data about copay accumulator benefit structures: https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html   Follow the link below for more information about copay accumulator adjustment programs: https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html   Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!   Welcome to Episode 24 - or our Copay Accumulator Adjustment Program 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. Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs: https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you    Follow the link below to read about specific data about copay accumulator benefit structures: https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html   Follow the link below for more information about copay accumulator adjustment programs: https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html   Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.  Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.    

New Ask the Expert host, Amy Board, sits down with previous ATE host Chris Bombardier! We ask Chris about his next adventure as the executive director of Save One Life and the future of the organization. Save One Life is a global non-profit founded by Laurie Kelley serving individuals and families affected by bleeding disorders in the developing world. Join us for a conversation with Chris as he explains the current realities of having a bleeding disorder in the developing world and what we can do to help and bring awareness. Welcome to Episode 23 - or our Chris Bombardier’s Next Adventure 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. Follow the link below to sponsor a child with hemophilia across the globe: https://saveonelife.net/sponsorship Follow the link below to contribute to Save One Life’s scholarship program: https://saveonelife.net/help-a-student-pay-for-college Follow the link below to contribute to a family in the developing world start a business: https://saveonelife.net/help-a-family-start-a-business Follow the link below to send a child in the developing world to camp: https://saveonelife.net/product/help-a-child-go-to-camp Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia.  Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and Thrombosis Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy 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.   Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail?  If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of  the Ask The Expert Podcast we catch up with Rich Pezzillo, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we can be advocates. Welcome to Episode 12 - or our Community Advocates Episode - of the Ask The Expert Podcast!   Follow the link below and click the ‘Receive our Newsletter’ link to receive updates regarding healthcare updates referenced by Rich Pezzillo http://www.hemophiliafed.org/advocacy/ Registration for the National Hemophilia Foundation's Washington Days: https://www.hemophilia.org/Events-Educational-Programs/Washington-Days   Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia and inhibitors be thinking and asking their clinicians about? That’s what we’re here to discuss with this month’s guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies 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.   Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)   Link to Guy Young Interview Transcript   Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to Episode 10 - or, our Bleeding Disorders Across The Globe 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. Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) LA Kelley Communications Save One Life Connect with BloodStream: BloodStream Facebook Page BloodStream Twitter Account Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Host Patrick James Lynch on Twitter and Instagram.

“I can’t do that.” “That’s not for me.” “I’m not able to do that.”  Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder.  But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education 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. Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host) Check out more of our podcasts on BloodStream Media Check out the GutMonkey website HERE

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