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Global Hemophilia Report on LinkedIn

Global Hemophilia Report

enFebruary 27, 2023

Where does research go from here? S1 Finale!

Renowned hematologist, researcher, and senior advisor to the Global Hemophilia Report Dr. Donna DiMichele shares some of her Season 1 takeaways and thoughts about the future of hemophilia research.

Senior Advisor:

Donna DiMichele, MD

Hosted by:

Patrick James Lynch

Show Notes:

Presenting Sponsor: Sanofi

Subscribe to the Global Hemophilia Report

Listen to BloodStream’s Journey to Joint Health episode.

Connect with the Global Hemophilia Report

Global Hemophilia Report on Twitter

Global Hemophilia Report on Facebook

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Global Hemophilia Report

enDecember 15, 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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enSeptember 09, 2022

The Most Common Bleeding Disorder You’ve Never Heard Of

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.

Learn more about HHT

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

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Subscribe to The Final Summit Podcast

enAugust 26, 2022

A women’s movement’s a brewin’

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.

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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enAugust 12, 2022

Sexual health and bleeding disorders

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:

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:

enJuly 22, 2022

The Making of The Final Summit and Science Making a Difference in Rare Disease

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.

Show Notes:

Connect with BloodStream Media:

enJuly 08, 2022

Vinson

After being denied his permit to climb Antarctica's highest peak, Chris struggles with his inner demons of not being good enough, and what it means to achieve a goal.

Show Notes:

The Final Summit is sponsored by Tremeau Pharmaceuticals. Tremeau’s RESET-HA Study is a clinical research study for people who experience joint pain due to hemophilia, and you can learn more about it by visiting resethastudy.com

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

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enJuly 04, 2022

Carstensz Pyramid

The highest point in Australasia leads Chris on a trek through a jungle, and opens up a discussion on forging your own path, saying yes to the unknown, and his greater mission connected his journey to global health initiatives.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

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Metal Heath Educational Resources

enJune 27, 2022

Thalassemia’s dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari, plus aging and changing on Let’s Talk

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

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.

Portraits of Progress

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enJune 24, 2022

Denali

After a severe bike accident limits his training, Chris pushes himself too hard on North America's highest peak, leading to an honest discussion of masculinity, bleeding disorders, and what it means to listen to yourself.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

Connect with BloodStream Media:

enJune 20, 2022

Elbrus

Memories of the Russian peak are overshadowed by the visions of tanks, war, and military check points, and opens up a discussion of how war and conflict affect medical access. Plus, a bike accent threatens to upend Chris' journey.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

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CSL Behring gene therapy makes comeback after hold for FDA priority review

enJune 13, 2022

Rare Disease Podcasters on Patient-Centricity and a new segment of The Well!

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.

Show Notes:

Subscribe to:

Once Upon a Gene

2DD

Stronger Everyday

Recent novel therapy news:

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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enJune 10, 2022

Aconcagua

Chris is reminded of the power of the outdoors on the highest point in South America, and it inspires him to bring that same joy and wonder to his bleeding disorder community back home.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

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enJune 06, 2022

Kilimanjaro

A journey to Africa's highest peak kicks off Chris' Seven Summit's journey, but raises questions about the privilege, wealth and medical access that we're afforded in the United States.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

Connect with BloodStream Media:

enMay 30, 2022

Women prioritized at World Congress and coping with loss for Mental Health month

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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enMay 27, 2022

Everest

When Chris Bombardier climbed the tallest peak in the world he was faced with questions about his bleeding disorder, his mortality, and his obligations to himself and to his family.

Show Notes:

The Final Summit was also made in part by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community.

Connect with BloodStream Media:

enMay 22, 2022

Journey to Joint Health Panel - LIVE from HFA!

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:

HFA Symposium 2022

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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enMay 13, 2022

Live from HFA w/ Keynote Speaker, Zander Masser!

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!

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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enApril 29, 2022

Live from HFA w/ Keynote Speaker, Adar Cohen!

Patrick and Amy are LIVE from HFA Symposium! Listen in to keynote speaker, Adar Cohen, as he shares how the strength of our communities relies on our willingness and our ability to have the big, complicated conversations in our work, in our families, and in our civic lives.We’ll also have a new Let’s Talk segment with Josh Bragg. A great episode about those “big conversations” we often avoid.

Show Notes:

Learn more about Adar Cohen!

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

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