BloodStream

NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an interview with the founder of Hope Runs Red, Breana Sinkfield. All this and more!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film.   Show Notes:   Visit Hope Runs Red and watch or share your story!    Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter   

Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand's disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH's Comprehensive Care Summit in Dubai.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Medicaid Cuts - Take Action Today!   Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a lifeline: ask them to reject Medicaid funding cuts and other policies that would reduce coverage and disrupt care. For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers' offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you. Say or email:   I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask you to reject cuts to federal Medicaid funding. I am relying on you, as my Senator/Representative in Congress, to protect Medicaid from funding cuts and other policies that would reduce coverage and care.    Medicaid covers life-sustaining treatment and care for up to one-third of the bleeding disorders community. Without Medicaid, low-income people with bleeding disorders will have no access to the regular care they need to prevent or treat painful, debilitating, and potentially life-threatening bleeding episodes. People will experience preventable health complications – and overall healthcare costs will rise.   Please stand with the bleeding disorders community and so many others who rely on Medicaid, and reject cuts to this program that provides essential coverage to vulnerable individuals across the country.   ** Hemab Therapeutics Announces Start of Velora Pioneer, a Phase 1/2 Clinical Trial Investigating HMB-002 for the Treatment of Von Willebrand Disease: Press Release   More information about the vWD clinical trial participation Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visionary subjects behind our upcoming documentary Deliver Us. AND NYLI's Shanthi Hegde & Eliza Marie VanZweden! Whew!

On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   The CDC cuts are of particular concern to our community. The Division of Blood Disorders' work traces back to the 1980s' tainted blood crisis, when CDC investigators were the first to discern and warn of HIV's transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its “Community Counts” program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community. WHAT CAN YOU DO?   Call the Capitol switchboard: (202) 224-3121  *Anyone can call this number and get connected with their Senators and Representative. I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC's Division of Blood Disorders, where the hemophilia programs are housed. These programs:   Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments. Provide funding for education and outreach to increase patient and provider understanding of hemophilia. Help to protect the safety of our nation's blood supply.   I'm very worried about what this means for people with bleeding disorders and our country. Please work to restore the staffing and activities of the CDC Division of Blood Disorders.   I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. ** For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren't interested.  By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine' and the importance of embracing vulnerability for true resilience.   I'm Fine is presented by @SanofiUS   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter   

HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she's hearing in the community about gene therapy for hemophilia B.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

On this special pop-up episode of the Bloodstream podcast, we're back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions.   I'm Fine is presented by @SanofiUS   Please share this survey with any friends you have with hemophilia A with or without inhibitors, who will help us educate the investment community on the need for new and better therapies.     $50 gift card to each of the first 50 survey respondents!   https://www.surveymonkey.com/r/geneventiv-2   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenges.    I'm Fine is presented by @SanofiUS   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

We celebrate Rare Disease Day because we love our Rares! Also, folks from WHF join us to share their comprehensive summit and the gene therapy segment is back with a new host and Dr. Mark Kay and genetic counselor, Kaylee Dollerschell.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  

We've got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He's an incredible leader in the rare disease community and we're excited to have him on BloodStream! We'll also hear from Wes Michael from Rare Patient Voice.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org   Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com    Check out Corbin Whittington's LinkedIn page   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we'll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We'll tell ya all about it!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more!    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I'm Fine segment with Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   I'm Fine is presented by @SanofiUS   Check out season 14 of Stop the Bleeding!   To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream!   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   It's a Whole New World brought to you by @CSLBehring.    The 1 out of 20 Podcast featuring PJL   Check out season 14 of Stop the Bleeding!   To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org  

We've got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we'll tell you all about it! Plus, the new season of Stop the Bleeding! And the I'm Fine segment with Michael Bishop.  Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast I'm Fine is presented by @SanofiUS Check out season 14 of Stop the Bleeding! To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)'s life and her contribution to the bleeding disorder community.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   It's a Whole New World brought to you by @CSLBehring.    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y'all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I'm Fine segment with Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   I'm Fine is presented by @SanofiUS Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We've got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA's Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions.  Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Want more information on Alternate Funding Programs? Roland said to Google it.  But, here's some more stuff: AFP White Paper The Present and Future of Alternative Funding Programs for Specialty Drugs HFA Project ECHO: Recognition and Care of Women with Bleeding Disorders Oct 28 2024, 12:00 pm - 1:00 pm EST   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Genentech Patient Foundation is dedicated to making sure that people with hemophilia A can get access to treatment. No matter what type of health insurance you have, and even if you have none at all, there may be some potential options available to help you afford your medicine. To learn more about these resources and find out if you are eligible, visit www.HemophiliaAccess.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

We recap NBDF's BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I'm Fine featuring guest host Michael Bishop.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Help celebrate International Plasma Awareness Week!   I'm Fine is presented by @SanofiUS   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Coming to you LIVE from NBDF's Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don't wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview with Janet Brewer from CHES.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the challenges of making the film, Jenna's personal connection to the UK contamination scandal, and how storytelling can honor the heartbreak, courage and sacrifice of the victims of the blood scandal, and their loved ones. Plus, the second installment of Jack Bridge's interview with Luke Pembroke in I'm Fine segment.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   To learn more about Miranda and others in the hemophilia community, please visit www.treathemA.com   I'm Fine is presented by @SanofiUS    What We Wished We Could Be film: Website - Instagram - Trailer   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Patrick survives his first tornado warning and we've got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. To read “What are fibrinogen disorders?” PDF, CLICK HERE.    Tammy's documentary Compromised: Life without Immunity   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   I'm Fine is presented by @SanofiUS    Listen to the Global Hemophilia Report   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I'm Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plus, Brandon Young and the  formation of a rare disease intercenter within FDA.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   To learn more about the FDA's Rare Disease Innovation Hub: EveryLife Foundation    Visit NBDF's Steps for Living   Brandon Young's Country Boy Fishing   Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   I'm Fine is presented by @SanofiUS    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role of steroids. Additionally, Makenna Dietrich shares her journey in bleeding disorder advocacy. The episode includes updates from Star Therapeutics on subcutaneous therapy for von Willebrand disease and insights on closing racial health equity gaps in the US. We also invite you to help pick a new BloodStream “theme song”.    Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Show Notes: Subscribe: The BloodStream Podcast   Hemophilia Uncensored Social Media: Instagram & TikTok    Star Therapeutics Presents Clinical Data for VGA039, a Subcutaneous Therapy for the Treatment of Von Willebrand Disease (VWD) How the U.S. can close longstanding racial health equity gaps Visit BEQVEZ.com to learn more about gene therapy, sign up for additional information, and listen to real patients who are now living differently.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I'm Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment?    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   I'm Fine is presented by @SanofiUS    Mild Matters Program   On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We've got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial dosing of gene therapy for hemophiia B.    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Mild hemophilia truly does matter and we're with Shellye Horowitz, formally with HFA, to hear about HFA's Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I'm Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   I'm Fine and Elite Athletes with Hemophilia are presented by @SanofiUS    Mild Matters Program   On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton's story (the first hemophilia B patient to be commercially dosed with gene therapy!).    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you'd like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia).    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I'm Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Shoulders of Giants Film Watch the movie and host a screening: ontheshouldersfilm.com    Beyond our Blood Watch the short films and download the facilitation guide: beyondourblood.com   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Birkman. FLOW co-host Jessica Richmond sits in for Patrick and we'll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

We're back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don't miss it!   Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA's history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Check out the Everyday Life Foundation hosting Bombardier Blood Everyday Life Foundation Legislative Asks   This Rare Disease Day segment is brought to you by Genentech. Genentech has several resources to help caregivers navigate hemophilia including stories from other members in the community. Please visit www.thecommunityhelps.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin' Rare Disease Day.   Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

We've got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed.  Show Notes: Subscribe: The BloodStream Podcast To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

It's a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more!   Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   Join the Movement - Equity for Women with Bleeding Disorders FAIR Coalition CHES - Programs for Women with Bleeding Disorders   Take Action Today! - Click HERE   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

We've got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we've got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I'm Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We'll get into it all, AND MORE, on this episode. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine and Elite Athletes are presented by @SanofiUS  Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community. Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation  Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I'm Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine and Elite Athletes are presented by @SanofiUS  Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community. Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y'all! Also, A new (and fantastic!) I'm Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment.    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.  

Amy turns the table on the latest I'm Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine is presented by @SanofiUS  Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community. Segment brought to you by Genentech, please visit www.treathemA.com to learn more. Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation  Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI.  Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. Subscribe to PNH: Facts, Fiction & FYI.

Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I'm Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited.  Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   I'm Fine and Elite Athletes with Hemophilia are presented by @SanofiUS    Sanofi seeks to expand the idea of what's possible for the hemophilia community. Take a deeper look at the science behind hemophilia and an important connection between factor activity levels and potential activities at LevelsMatter.com   Sanofi aims to raise the bar for the patients living with hemophilia.  Reimagine what's possible by visiting Rareblooddisorders.com to hear more about Sanofi's dedication to the bleeding disorder community.   Watch "I'm Fine": A panel discussion webinar led by Patrick with The National Bleeding Disorders Foundation    WFH statement on the Israel-Palestine crisis Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

We're back with another episode of BloodStream featuring Maya Bloomberg's 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I'm Fine segment with Mark Skinner.    Show Notes: Subscribe: The BloodStream Podcast   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.   To support CHES's program for women with bleeding disorders, to attend CHES events for individuals and families in the inhibitor community. Or simply to get in touch with comments and ideas please reach out to us at www.ches.education   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  

Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I'm Fine with a spotlight on–leadership. Be careful, leaders, we're coming for ya! Show Notes: Subscribe: The BloodStream Podcast   Watch Redefining Impossible for free HERE   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Elite Athletes and I'm Fine segments presented by @Sanofi   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I'm Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subscribe: The BloodStream Podcast   Back to School Resources at Steps for Living   Sickle Awareness Month Resources    Mental Health Matters Too   Watch Redefining Impossible for free HERE   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Elite Athletes segment presented by @Sanofi   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter