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Patrick and Amy discuss a recently published article by clinicians urging colleagues to educate their patients via social media. Then, our hosts bring on Brian O’Mahony to discuss his gene therapy clinical trial experience, his take on recent community news, and how the Irish Haemophilia Society has fared through COVID19. Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   BRIAN on Twitter: http://bit.ly/BOMtwitter TWITTER changing hematology: http://bit.ly/TwitterASH21 MEN born w hemophilia on gene therapy: http://bit.ly/RobustInquiry GENE therapy trial placed on hold: http://bit.ly/GTtrialHold   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy discuss the long-awaited Von Willebrand Disease (vWD) guidelines published in the medical journal, Blood; provide an exciting update on a recent “Believe 19” guest, and speak to Camille Proctor, founder of The Color Of Autism Foundation.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   vWD Clinical Guidelines: http://bit.ly/vWDguidelines FLOW podcast: http://bit.ly/FLOWBSM PHILLY Famous podcast: http://bit.ly/PhillyFamousPodcast COLOR of Autism Foundation: http://bit.ly/ColorOfAutism   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20   #hemophilia #vonwillebranddisease #vwd #autism #podcast

Patrick and Amy review NHF’s FAQs regarding the COVID-19 vaccine’s safety for people with bleeding disorders, discuss recent healthcare legislative victories, and welcome Christie VanHorne and Jessica Richmond, hosts of BloodStream Media’s newest show full of straight talk about extreme bleeding: FLOW.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite FLOW podcast: http://bit.ly/FLOWBSM CHRISTINE VanHorne on LinkedIn: http://bit.ly/CVHonLI JESSICA Richmond on LinkedIn: http://bit.ly/JLRonLI NEHA Fund for Max: http://bit.ly/nehamemorial  WASHINGTON Days registration: http://bit.ly/DCDays2021 COVID-19 Vaccine FAQs from NHF: http://bit.ly/COVIDvaccineNHF SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy kick off the new year with health equity specialist and community member Alexa Abreu to discuss the role diversity and inclusion plays in achieving health equity.    PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   ALEX on LinkedIn: http://bit.ly/AlexaOnLI   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy are joined by acclaimed pediatric hematologist and researcher Dr. Robert Sidonio for his take on the state of bleeding disorders as we close out this most unusual year.  Happy Holidays!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   FLOW, a BloodStream show for women - http://bit.ly/BSMFlow DHAMMA (Vipassana) - http://bit.ly/DhammaBSM   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy are joined by National Hemophilia Foundation’s (NHF) VP of Public Policy Nathan Schaefer and Senior Manager of Government Relations Bill Robie to discuss key differences between state and federal advocacy, unique challenges to state-level advocacy, and how NHF’s State Based Advocacy Coalitions (SBAC) program assists chapters with state advocacy.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   NHF’s State Based Advocacy Coalitions (SBAC) Program: bit.ly/NHFSBAC   HERTZ on Cheat Codes: bit.ly/cheatcodespod PRESTON on Journeys: bit.ly/BloodStreamJourneys GENE THERAPY article: bit.ly/GTfactor   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20    

Patrick and Amy are joined by hemophilia and sickle cell expert Dr. Michael Callaghan who provides major takeaways from #ASH20. They also discuss actor Amanda Fuller’s disclosing her son’s hemophilia and the Irish Haemophilia Society’s CEO Brian O Mahony disclosing his enrollment in a gene therapy clinical trial.    PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   AMANDA FULLER’s IG post: bit.ly/AFullerHemB PEOPLE Magazine story: bit.ly/AFullerPeople   DIVERSITY & Inclusivity in research: bit.ly/BMSDICT   BRIAN O MAHONY’s gene therapy experience: bit.ly/BrianGThemB IRISH TIMES story: bit.ly/ITFunCure   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - bit.ly/BSPYT20

Patrick and Amy discuss the importance of Giving Tuesday, the significance of #ASH20 (American Society of Hematology’s Annual Meeting), and they speak with a young man named Zachary who recently made an incredible commitment to Save One Life.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUPPORT Save One Life: https://bit.ly/S1L2020 S1L SCHOLARSHIP Program - Philippines: https://bit.ly/S1LScholarshipPh WORLD AIDS Day w/ Jeanne White-Ginder: https://bit.ly/JeanneWAD2020   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

The BloodStream team shares gratitude, stories, and bizarre moments from Thanksgivings past, then Philadelphia Youth Basketball CEO Kenny Holdsman joins for a Believe 19 interview!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SEGMENT SPONSOR: Genentech - bit.ly/BloodlessBattle TWITCH Rivals: bit.ly/2ZXZRTx   PHILADELPHIA Youth Basketball: bit.ly/PYBBSP20   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

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    

Patrick and Amy discuss ICER’s recently published Evidence Report on Therapies for Hemophilia A as well as NHF’s Virtual Insurance and Reimbursement Conference. Then Amy interviews Nourbese Flint, the Policy Director for Black Women For Wellness, and we hear from the Assistant Secretary for Health, ADM Brett Giroir.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   ICER’S EVIDENCE REPORT: http://bit.ly/ICERHemA2020 NHF’S INSURANCE CONFERENCE: http://bit.ly/InsurReimburse20 BLACK WOMEN FOR WELLNESS: http://bit.ly/bwwlaBSP   CHEAT CODES PODCAST: http://bit.ly/CheatCodesPod   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20   #hemophilia #ICER #healthinsurance #blackwomenforwellness #bleedingdisorders #bloodstreampod

In this Mischief Night 2020 episode, Patrick and Amy are joined by Haunting Season creator and host Joshua Sterling Bragg to escape the world as we know it for a quick trip into the paranormal and unexplainable! That, plus an interview with a representative of the high school activist group Swab4USA.   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   HAUNTING SEASON: http://bit.ly/HSBSP20   SWAB 4 USA: http://bit.ly/Swab4USA   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Patrick, Amy, and Natalie share some announcements before Kollet Kouliaos, the National Hemophilia Foundation's Senior Director of Payer Relations, joins to discuss some recent and encouraging survey results regarding copays and out-of-pocket costs, then fresh off the Appalachian Trail, teen adventurer William Addison joins to tell us about his 2,200 mile hike benefitting Save One Life!   PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite SEGMENT SPONSOR: Genentech - https://bit.ly/2FZ7K3P   Check out Twitch Rivals: https://bit.ly/2ZXZRTx    Survey Results on Copay Assistance: http://bit.ly/CoPaySurvey SOBO for Save One Life: http://bit.ly/SOBO4SOL WFH’s new President, Caesar Garrido: http://bit.ly/WFHCesar   Check out the new podcast, Haunting Season: http://bit.ly/HSBSP20   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Patrick and Amy discuss the recently published, “100 Days Agenda: A Patient-First Blueprint” and are then joined by National Hemophilia Foundation’s Elizabeth Molnar to talk about the Unite For Bleeding Disorders walks! PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite 100 Days Agenda: A Patient-First Blueprint: http://bit.ly/100DaysPatientsFirst NHF’s Blue Sky Initiative: http://bit.ly/NHFBlue2020 Unite For Bleeding Disorders: http://bit.ly/UniteBD2020 Casting  for Season 2 of The Pain Podcast - http://bit.ly/PainPodCasting   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP LIKE BloodStream on Facebook - bit.ly/BSFB20 WATCH BloodStream on YouTube - http://bit.ly/BSPYT20

Self-infuse from anywhere, advocacy wins in Texas, and what the death of Supreme Court Justice Ruth Bader Ginsburg could mean for the future of the Affordable Care Act (ACA) are all topics on today’s episode, plus, an interview with sickle cell and hemophilia expert hematologist Dr. Michael Callaghan, and a reading of a recently published article challenging the scrutiny of gene therapy clinical trials.   Presenting Sponsor: Takeda Segment Sponsor: Genentech   NHF’s Blue Sky Initiative   Stop The Bleeding!’s Self-Infusion Episode   Aggregate of articles on Supreme Court vacancy.    SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

Roy Ginder, the husband of notable AIDS and hemophilia advocate Jeanne White-Ginder, passed away early Wednesday morning. We pay tribute to Roy and share moving audio from a 2017 interview he gave to Patrick about the love of his life, Jeanne White.   Presenting Sponsor: Takeda   Fundraiser to support Jeanne White-Ginder   SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

Amy introduces The Believe 19,  a new segment with an interview with Rue Mapp, founder and CEO of Outdoor Afro. Outdoor Afro is a national organization celebrating and inspiring Black connections and leadership in nature. We’ll hear what their work is all about!  Also, Patrick and Natalie share their excitement to participate in Save One Life’s annual fundraiser, Wheels for The World. Listen in to celebrate giving back and learn more about different ways to contribute to the good work being done in our communities!    Presenting Sponsor: Takeda Learn More about Outdoor Afro: Outdoor Afro Website Sign up for Wheels for the World: Save One Life  Listen to the It’s in the Gene’s Podcast!: Gene Therapy Podcast   SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

We breakdown and react to a recent article on the role of child-abuse pediatricians and some of the dreadful outcomes that’ve come from the creation of this well-intended specialty.  Then NHF board member and blood brother John Faria joins Patrick to discuss his role in the recently launched HemeWork program.   Presenting Sponsor: Takeda Segment Sponsor: Genentech Article: When the Misdiagnosis Is Child Abuse The Marshall Project  HemeWork: Community Stories   SUBSCRIBE to BloodStream on Apple Podcasts! LIKE BloodStream on Facebook! WATCH BloodStream on YouTube!

To the surprise of many, on August 19th the US Food and Drug Administration denied the first application for a one-time gene therapy for hemophilia A. Patrick and Amy process this major news then share soundbites from their conversations with doctors Valentino, Quon, Young, and Wang during #NHF2020's Science Fair about gene therapy, emicizumab, and novel therapies. Presenting Sponsor: Takeda Response to FDA's Actions: HFA Statement The Science Fair is made possible by Spark Therapeutics