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:

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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

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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