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
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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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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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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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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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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.
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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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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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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!
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Article:
Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement
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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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.
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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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Amy and Patrick are joined by Believe Limited colleague and new BloodStream Podcast correspondent James Maple! Plus, Let’s Talk is back with a segment of suffering that features interviews with community members Dwayne Whitis and Heather Hogan, and a follow-up interview with Dr. Hanny Al-Samkari on the 2nd most common bleeding disorder that you don’t know about!
Presenting Sponsor: Takeda (bleedingdisorders.com)
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
Subscribe to BloodStream Podcast
Listen to the latest from BloodStream’s FLOW podcast
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
Connect with BloodStream Media:
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There is a women’s movement a brewin’ and Patrick & Amy have the scoop! Special guest Ashley Gregory is here to tell us all about it! Plus, Amy has a diagnosis of her own to talk about, and Jessica brings us back to The Well for a segment on growth featuring community member, Michelle Conde.
Presenting Sponsor: Takeda (bleedingdisorders.com)
Episode Advertiser: CSL Behring (portraitsofprogress.com)
Learn more about FAIR! Contact ashley.gregory@hemofoundation.org.
Show Notes:
Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.
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Listen to the latest from BloodStream’s FLOW podcast
To learn more about FAIR, Females Are Important to be Recognized, contact Ashley Gregory.
The Bloodstream Podcast is also brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com
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BloodStream welcomes Greig Blamey, a physiotherapist from Winnipeg, Canada and the lead investigator and author of Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers (A fantastic interview!). Plus, Patrick learned something at his recent HTC visit and the latest Let’s Talk mental health segment, featuring Joshua Sterling Bragg, on growing, evolving, and taking baby steps.
Show Notes:
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Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers: Click HERE
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
Connect with BloodStream Media:
Comedy writer Dru Johnston and mountaineer Chris Bombardier join Patrick and Amy for a discussion about the Making of The Final Summit, BloodStream Media’s podcast exploring what it means to chase a dream, achieve a dream, and realize then that the work has only just begun. We’ll also discuss the Celebration of Life for Val Bias and hemophilia A gene therapy approval for Europe.
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Patrick is joined by dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari who share more about Alpha and Beta Thalassemia, a sister blood disorder to hemophilia. Plus, we’ll get an update on Patrick’s chronic pain & Amy’s writing as well as a brand new Let’s Talk segment on aging and changing.
Show Notes:
Let’s Talk is brought to you by Sanofi
Metal Heath Educational Resources
Visit Shareyourwhy.com to meet the Sanofi CoRe team and hear from them and members of the community about their story and passion for the hemophilia community.
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Patrick and Amy are joined by three of the most prolific and committed rare disease podcasters out there: Effie Parks from Once Upon A Gene, Kyle Bryant from Two Disabled Dudes, and Bo Bigelow from Stronger Every Day. Those three titans behind the mic join us for a candid discussion about patient centricity, we touch on some recent news, FLOW’s Jessica Lauren Richmond is back with the latest installment of The Well.
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Recent novel therapy news:
CSL Behring gene therapy makes comeback after hold for FDA priority review
BioMarin delays planned FDA filing for hemophilia gene therapy
FDA Grants Breakthrough Therapy Designation to BIVV001 for Hemophilia A Treatment
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
The Bloodstream Podcast is brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com
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Women with mild hemophilia, vWD, and gene therapy were topics of discussion at The World Federation of Hemophilia’s World Congress that took place earlier this month in Montreal, Canada and Patrick and Amy were there! Hear about it as well as planning for the summer and our latest Let’s Talk mental health segment led by Believe Limited’s Joshua Sterling Bragg on loss.
Show Notes:
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
The Bloodstream Podcast is brought to you in part by a new educational gene therapy resource from CSL Behring called HemEvolution.
To learn more, check out www.HemEvolution.com
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Patrick and Amy hosted a LIVE Journey to Joint Health panel at HFA with eight blood brothers who shared their experience participating in the HFA led physical fitness challenge and now you can listen in! You’ll also hear from HFA CEO Sharon Myers and Board Chair Allie Ritcey, and we’ll cap today’s episode off with our second installment of The Well, a holistic wellness segment led by FLOW podcast host Jessica Lauren Richmond.
Show Notes:
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Segment Sponsored by Genentech: Visit https://www.hemlibra.com to learn more.
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Join Patrick and Amy for another LIVE episode from HFA Symposium where we have the pleasure of speaking with keynote speaker, Zander Masser. Zander’s father, Randy, lived with severe hemophilia B until he passed from AIDS-related illnesses in 2000 at the age of 52. Twenty years later, Zander unburied 10,000 slides from Randy’s career as a professional photographer and explores his process of exploring grief through creativity. Hear his incredible story right here on BloodStream.
Show Notes:
Learn more about Randy Masser
Unburying My Father, the book will be released on June 12, 2022. Learn more or pre-order HERE!
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
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Learn more about Adar Cohen!
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
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Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
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Article from Hemophilia News Today: Ankle Joint Damage in Hemophilia Common, But Not Linked to Pain
Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
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Presenting Sponsor: Takeda.
Visit bleedingdisorders.com to learn more.
Let’s Talk Sponsor: Sanofi.
Visit LetsTalkMH.com for mental health resources
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Global Hemophilia Report - new episode!
Haemcast Podcast w/ Luke Pembroke and PJL!
Max Feinstein on 2DD Podcast
Catch up on previous segments of Let’s Talk!
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Energizing & Empowering Minds
Learn and register for a program
Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds
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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community.
Let’s Talk - a film by Believe Limited, made possisble by Sanofi
Find Resources at Mental Health Matters Too
Presenting Sponsor: Takeda
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Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link
HR5801 - The Help Ensure Lower Patient Copays Act: Link
The Global Hemophilia Report: Link
Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at GJP@tribecacom.com.
Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at gjp@tribecacom.com.
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Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link
BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link
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