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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

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enMay 25, 2023

Fitusiran overview with Dr. Guy Young

Dr. Guy Young joins us for an overview on the newest non-factor replacement therapy for hemophilia A and B, still in clinical trials–Fitusiran. Maya Bloomberg, the HemeNP, is back and so is James Maple with a segment featuring community member and musical artist, Shelby Smoak. We’ll also get a sneak peak of a brand new documentary featuring members of our community!

Show Notes:

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Follow Maya Bloomberg @thehemenp

Check out https://shelbysmoak.com/ to listen to more of Shelby Smoak

Listen to PV Pod: Stories from the Marrow

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is brought to you by Genentech. To read about the efficacy and safety profile of this treatment, visit http://treathemophilia.com

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enMay 12, 2023

The Ethics of Gene Therapy and a conversation with Gunnar Esiason

Gunnar Esiason, son of NFL legend Boomer Esiason, shares his story of living with cystic fibrosis and becoming the advocate he is today. We also speak with Rich Gorman: ethicist (!) on the ethics of gene therapy. Josh reflects on the connection between physical and mental health on Let’s Talk. A packed episode!

Show Notes:

Subscribe:

Listen to PV Pod: Stories from the Marrow!

Learn more about Gunnar Esiason and cystic fibrosis here!

Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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BloodStream

enApril 28, 2023

World Hemophilia Day and new music from Tamar Mitchell

A stacked episode with a new Maya Bloomberg (@TheHemeNP !) segment, music from community member Tamar Mitchell, and Patrick sits down with Dr. Z (Zolotnitsky !) to discuss his PT work it the hemophilia community. All that, and more, on this World Hemophilia Day episode of BloodStream Podcast!

Show Notes:

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Celebrate World Hemophilia Day on social media!

Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here!

Listen here to Tamar Mitchell’s new EP:

Instagram

Apple Music

Spotify

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enApril 14, 2023

So, we hit a nerve

Patrick and Amy discuss the reaction to Patrick’s viral Warning to the Community and we can all agree that we struck a nerve! Also, our first segment with Maya Bloomberg, the @HemeNP where she discusses anemia. Plus, Blood Brother John Christen sharing his work, Bleeding China and the latest installment of Let’s Talk.

Show Notes:

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Check out Bleeding China on Substack by Blood Brother, John Christen

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources.

Brought to you by Sanofi

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enMarch 24, 2023

Own Your Path

What does taking ownership of your bleeding disorder look like? Patrick shares his thoughts and NHF’s education staff, Brendan Hayes and Heather Hicks join us to debut a new program that could change the game. Also, we introduce Maya Bloomberg, a certified nurse practitioner, who is addressing blood disorders through social media. A can’t miss episode!

Show Notes:

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Take control of your health care with NHFs Own Your Path program!

This app-based program will provide you with information to navigate life with a bleeding disorder. Being able to stay on top of your treatment is easier if you are able to manage your stress, get enough sleep, move your body, and stay on top of your nutrition.

Follow the newest BloodStream contributor, Maya Bloomberg: @thehemenp

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Segment is made possible by Genentech.

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About The Infected Blood Inquiry - The Haemophilia Society

enMarch 10, 2023

Rare Disease Day and Living in the Almost

We recognize and celebrate Rare Disease Day on BloodStream! A day to raise awareness, share your story, and appreciate the community we find ourselves in. We’ll also get an interview with community member, Murai Johnson, to honor of Black History Month and Josh is back with another Let’s Talk: Living in the Almost.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 24, 2023

Dear Hemophilia Community: A Warning

On this bonus episode, we continue to honor Black History Month with interviews with blood brother, Bobby Wiseman, and Dima Henricks, sickle cell advocate and founder of #ThroughThePain. Plus, a warning for the hemophilia community with care from Patrick and Amy.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 17, 2023

Washington Days and Amy’s Big Win

BloodStream welcomes back NHF Vice President of Public Policy, Nathan Schaefer to talk everything Washington Days and advocacy! Plus, an interview with community member and social worker, Mosi Williams and a new segment of The Well. Oh, and Amy and Patrick share some personal advocacy wins and bummers too!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 10, 2023

Connie Montgomery and a Let’s Talk Segment featuring Mike Hargett

BloodStream honors Black History Month with a series of interviews with community members and KOL’s Join us for this pop-up episode with Connie Montgomery as she shares her perspective with James Maple. Plus, Josh Bragg is back with another Let’s Talk featuring community member, Mike Hargett.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enFebruary 03, 2023

Dr. Steven Pipe on HEMGENIX, hemophilia B’s first gene therapy

We’ve got Dr. Steven Pipe with us to discuss the first gene therapy approved for hemophilia B, HEMGENIX. As the lead investigator of the HEMGENIX trial, Dr. Pipe details what patients need to know about HEMGENIX and what questions to consider when speaking with their hematologist. A must listen episode!

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

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enJanuary 27, 2023

Legislative wins and losses & CDC’s Aditi Kantipuly

A legislative package was approved at the end of 2022 with several wins and several disappointments for the rare disease community–we talk about it! Also, we welcome Aditi Kantipuly, a Research Collaborator for the CDC for a chat about health equity. Plus, Jessica Lauren Richmond is back with The Well, a segment featuring 5 steps to make your new year’s resolutions stick.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

As part of H.R. 2617, Congress delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought for and will help speed efforts to develop effective therapies and expand access to care.

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enJanuary 13, 2023

A Year in Review with NHF CEO, Len Valentino!

It’s the final episode of 2022! Patrick gives an update on his ankle journey, through the good and the bad, PLUS a terrific interview with NHF CEO and President, Dr. Len Valentino. We’ll close with a Let’s Talk segment on focus on trauma, depressive swings featuring our own, Patrick James Lynch.

Watch Jonah Hill’s Stutz on Netflix

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on

how to care for your own or someone you love’s mental health and strives to eliminate the

stigma associated with this discussion within the bleeding disorders community. Visit

Letstalkmh.com and click Resources.

Brought to you by Sanofi

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enDecember 23, 2022

Gene Therapy is Here (Kinda!)

The first gene therapeutic for hemophilia (specifically for hemophilia B) was approved last week, and with that –a new era of treatment options has begun! Amy and Patrick share first reactions to the approval news and toss out opinions on how this news may impact our community in 2023. We also have Michelle Rice with us to share how her work is continuing to bring access to treatment for rare disease patients. Plus, a new segment of The Well on Relationships.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

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enDecember 09, 2022

It’s gratitude season, plus takeaways from WFH Gene Therapy Roundtables!

In a terrific turn of events, Patrick got an invite to the prestigious WFH Gene Therapy Roundtable featuring a number of experts discussing the challenges and opportunities presented by gene therapy. So that means Patrick will report back all the key takeaways! And, it’s gratitude season, so naturally we share what we are most thankful for this year. Plus, a new Let’s Talk about dating and relationships.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

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enNovember 25, 2022

Are patient influencers a good thing?

A good one this week! Erin Willis, associate professor at the University of Colorado joins us to discuss the increasingly popular use of patient influencers in pharmaceutical marketing. The goal of her research is to explore how message design can influence people's understanding about their health and choices. Also, Jessica Richmond is back with another segment of The Well as she investigates how the past informs the present.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

Genentech has local Clinical Education Managers (CEMs) who offer one-on-one support throughout your entire hemophilia journey.

To get in contact with a CEM, visit www.TalkToACEM.com

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enNovember 11, 2022

Patrick’s new freedoms and restrictions post-op, plus Michelle Conde and the Glanzmann's Research Foundation

Patrick shares life post ankle surgery and wonders if everything from now on will be impacted by hemophilia. Plus, a fantastic interview with Hemophilia of Gerogia’s Director of Advocacy, Michelle Conde AND members of Glanzmann's Research Foundation, Peter Z and Taylor Anne. We’ll cap the episode with another Let’s Talk mental health segment on acknowledging your past.

Show Notes:

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Check out the work Glanzmann's Research Foundation is doing!

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on

how to care for your own or someone you love’s mental health and strives to eliminate the

stigma associated with this discussion within the bleeding disorders community. Visit

Letstalkmh.com and click Resources.

Brought to you by Sanofi

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enOctober 28, 2022

LGBTQ+ health issues w/ Dr. Nathan Connell and a vWD story of first pregnancy, labor, and delivery

On the heels of National Coming Out Day, BloodStream is joined by Dr. Nathan Connell, Clinical Chief of Hematology at Brigham and Women’s Faulkner Hospital to discuss LGBTQ+ health issues in the bleeding disorder community. Plus, Patrick reconnects with Annelise Ellis, longtime friend and fellow person with a bleeding disorder, as she shares with us her story of how von Willebrand disease impacted her first pregnancy, labor, and delivery.

Show Notes:

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Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

Genentech, open enrollment is right around the corner and Genentech has resources to support you through this process. To learn more about these resources, visit www.HemophiliaAccess.com

CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

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enOctober 14, 2022

Panel: Diversity, Equity & Inclusion in bleeding disorders, plus “living in the moment.”

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream’s Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation’s Bleeding Disorders Conference as well as the latest from the Let’s Talk mental health segment. Plus, news from ICER on gene therapy!

Show Notes:

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Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement

Article:

Presenting Sponsor:

- Takeda, visit bleedingdisorders.com to learn more.

Episode and Segment Sponsors:

- CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history

- Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community.

- Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com

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enSeptember 23, 2022

Pain, Mental Health, & Life Updates w/ Cazandra Campos-Macdonald & Laurence Woollard

BloodStream welcomes back frequents collaborators, Cazandra Campos-Macdonald & Laurence Woollard. Caz shares an emotional update on her chronic pain and mental health, while Laurence tells us about the impressive recent episode of Global Hemophilia Report featuring women with bleeding disorders.

Show Notes:

Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.

Listen to the latest from BloodStream’s FLOW podcast

Listen to the Pain Podcast

Brought to you in party by Genentech #Genentech #hemophiliacommunity #BleedingDisorders #Hemophilia #HemophiliaA #Healthcare

Brought to you in part by CSL Behring. To learn more, check out www.HemEvolution.com

If you have sickle cell disease, how often do painful crises have you visiting the doctor? Pfizer is now enrolling a research study of an investigational medicine that may help to prevent pain crises caused by sickle cell disease. If you have seen a healthcare provider for 2 to 10 sickle cell crises in the past year, you may be able to participate. To speak with the study team, visit ClinicalTrialSCD.com. With your help, we can pursue new treatment options for sickle cell disease. Learn more at ClinicalTrialSCD.com or click the link in the show notes.

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