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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Show Notes:
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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Show Notes:
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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Show Notes:
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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Show Notes:
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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
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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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Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Buffalo New Obituary
Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS: LINK
World Federation of Hemophilia
WFH VP Medical Glenn Pierce pays tribute to Val Bias: LINK
National Hemophilia Foundation
NHF Mourns the Loss of Longtime CEO, Val Bias: LINK
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We hear from Save One Life and the World Federation of Hemophilia on what to expect in 2022, as well as some gene therapy trial updates. Patrick and Amy speak about the loss of Val Bias and preview a special episode honoring his life.
Show Notes:
Presenting Sponsor: Takeda
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Presenting Sponsor: Takeda
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Top Ten BloodStream Media Episodes of 2021
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Presenting Sponsor: Takeda
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The National Hemophilia Foundation: Link
Hemophilia Federation of America: Link
Our Segment this month is made possible by Genentech
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Show Notes:
Presenting Sponsor: Takeda
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Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
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Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
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Show Notes:
PRESENTING SPONSOR: Takeda
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme
SEGMENT SPONSOR: Genentech
BLOODSTREAM MEDIA: All our stuff!
RARE PATIENT VOICE: Website
LET’S TALK SEGMENT: Website
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Show Notes:
PRESENTING SPONSOR: Takeda - bleedingdisorders.com
SUBSCRIBE: BloodStream Podcast on Apple Podcasts
CHECK OUT: All BloodStream Stuff
FIND OUR HOSTS ON SOCIAL: @patrickjameslynch @boardo87
Episode Notes:
THE PAIN PODCAST: Season 3 - Now Live!
LUKE PEMBROKE: Twitter, Instagram
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Find all of our bleeding disorders podcasts on BloodStreamMedia.com
Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let’s Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.
Show Notes:
PRESENTING SPONSOR: Takeda
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme
SEGMENT SPONSOR: Genentech
BLOODSTREAM MEDIA: CHECK OUT all our stuff
LINKS FROM THIS EPISODE:
Find our Hosts on Social: @patrickjameslynch @boardo87
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Find all of our bleeding disorders podcasts on
Check out Believe Limited’s Other Work:
BloodFeed: bloodfeed.com
Bombardier Blood: bombardierblood.com
Hemophilia: The Musical: breakingthroughhemophilia.com
My Beautiful Stutter: mybeautifulstutter.com/
Stop The Bleeding!: stbhemo.com
Teen Impact Awards: teenimpactawards.com
The Science Fair: thesciencefair.org
During last month’s Bleeding Disorders Conference, Believe Limited’s Science Fair hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.
Show Notes:
PRESENTING SPONSOR: Takeda
SCIENCE FAIR SPONSOR: Spark Therapeutics
Register for NHF's State of the Science Research Summit
NHF Education on Rare Bleeding Disorders
Emicizumab PUPs and Nuwiq ITI Study
Patrick and Amy are back LIVE bringing you the best of BloodStream at BDC! Listen in as they cycle through nine patient and caregiver guests catching a glimpse of those “hallway conversations” we all miss.
Show Notes:
PRESENTING SPONSOR: Takeda
EPISODE SPONSOR: MyFactorFam.com
Patrick and guest co-host Mel Forrest welcome on members of National Hemophilia Foundation's staff to preview the community's biggest annual meeting of the year.
Show Notes:
PRESENTING SPONSOR: Takeda
EPISODE SPONSOR: MyFactorFam.com
REGISTER for BDC: https://bit.ly/3jT9SdJ
CHECK out BDC Interactive program: https://bit.ly/3iJEcIJ
LISTEN to The Pain Podcast
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK out all our stuff
Show Notes:
PRESENTING SPONSOR: Takeda
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
Patrick and Amy catchup during the Lynch family’s east coast tour and discuss recent articles on California v Texas, shared decision making models, and safety related to AAV gene therapy.
Show Notes:
PRESENTING SPONSOR: Takeda
CONNECT with Genentech
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
JD Supra Article - California v. Texas
Article on Shared Decision-Making
Patrick and Amy are LIVE and discuss some unfortunate lunchtime mishaps and new studies on coffee before Josh leads the latest Let's Talk mental health segment and Patrick leads a talk with Sean and Kyle, hosts of the Two Disabled Dudes Podcast.
Notes:
Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite
Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP
CHECK OUT Two Disabled Dudes Podcast: https://bit.ly/3cPcM0z
READ The Health Benefits of Coffee: https://nyti.ms/3gGrl7J
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP