We’ve all had a moment where we arrived at the grocery store and can’t remember passing any of the stoplights along the way. We’re halfway down an aisle and scrambling to remember what we even needed. Our mind is in overdrive trying to sort through our ever-growing to-do list. We’ve been there when just making it through the next task is hard. But the normal stresses of life aren’t the only thing YOU have to deal with. Nora McInerny hosts The Head Start: Embracing the Journey, a new podcast ...
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Daily Deals
Highlights from ASH with Dr. Akshat Jain
Manage episode 405322066 series 1105104
Content provided by BloodStream Media. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by BloodStream Media or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.
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:
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:
105 episodes
ShareManage episode 405322066 series 1105104
Content provided by BloodStream Media. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by BloodStream Media or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.
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:
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:
105 episodes
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1 Medicaid Cuts and vWD Clinical Trials 1:08:14
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Play Later Play Later Lists Like LikedPotential 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…
1 New Music from Trevor Martin and info about Deliver Us, an upcoming documentary 1:24:28
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Play Later Play Later Lists Like LikedOne 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 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 learn more about Trevor and hear his music, visit trevormartinmusic.com To learn more about Trevor Martin's treatment, visit Hemlibra.com Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on X/Twitter…
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…
1 HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes 37:59
37:59 Play Later Play Later Lists Like Liked37:59
Play Later Play Later Lists Like LikedHFA 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…
1 NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights 1:07:09
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Play Later Play Later Lists Like LikedPatrick 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…
1 Behind the Mystery: Rare and Genetic Diseases 35:04
35:04 Play Later Play Later Lists Like Liked35:04
Play Later Play Later Lists Like LikedBehind 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…
1 Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey 43:54
43:54 Play Later Play Later Lists Like Liked43:54
Play Later Play Later Lists Like LikedWe’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…
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Daily Deals
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We’ve all had a moment where we arrived at the grocery store and can’t remember passing any of the stoplights along the way. We’re halfway down an aisle and scrambling to remember what we even needed. Our mind is in overdrive trying to sort through our ever-growing to-do list. We’ve been there when just making it through the next task is hard. But the normal stresses of life aren’t the only thing YOU have to deal with. Nora McInerny hosts The Head Start: Embracing the Journey, a new podcast ...
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A top podcast for healthcare leaders, with over one million downloads, Radio Advisory is your weekly download on how to untangle the industry's most pressing challenges to help leaders like you make the best business decisions for your organization. From unpacking major trends in care delivery—like site-of-care shifts and the rise of high-cost drugs—to demystifying stakeholder dynamics, to shining a spotlight on priorities that may get overlooked, we're here to help. Our hosts and seasoned r ...
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