Medicaid Cuts and vWD Clinical Trials
BloodStream
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 to learn more. Show Notes: Subscribe: Medicaid Cuts - Take Action Today! Please call or email the offices you visited in March and remind your lawmakers that Medicaid is a...
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New Music from Trevor Martin and info about Deliver Us, an upcoming documentary
BloodStream
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! 😅 Presenting Sponsor: Takeda, visit to learn more. Show Notes: Subscribe: It’s a Whole New World Gene...
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Shakeup at CDC - What does it mean???
BloodStream
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 to learn more. Show Notes: Subscribe: The CDC cuts are of particular concern to our community. The Division of Blood Disorders’ work traces back to the 1980s’ tainted blood crisis,...
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I’m Fine: The Devil You Know
BloodStream
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media: ...
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HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes
BloodStream
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 to learn more. Show Notes: Subscribe: 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 or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media: ...
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I'm Fine: Honesty & Lies
BloodStream
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...
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NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights
BloodStream
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 co-host, Jessica Richmond about women with bleeding disorders. Presenting Sponsor: Takeda, visit to learn more. Show Notes: Subscribe: 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 or download B SUPPORT wherever you get your apps for more information. ...
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I'm Fine: The First Fracture
BloodStream
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 to learn more. Show Notes: Subscribe: Connect with BloodStream Media:
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Happy Rare Disease Day!
BloodStream
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 to learn more. Show Notes: Subscribe: 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 or download B SUPPORT wherever you get your apps for more information. Connect with BloodStream Media:
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The wisdom of advocate Corbin Whittington
BloodStream
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 to learn more. Show Notes: Subscribe: To learn more about our advocacy digital storytelling platform, , head over to Learn more about survey for the bleeding...
info_outlinePotential 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:
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.
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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
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