BloodStream
230 episodes - English - Latest episode: 8 days ago - ★★★★★ - 38 ratingsBloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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Episodes
New NBDF CEO, Phil Gattone
April 12, 2024 07:00 - 38 minutes - 53.7 MBWe have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy ...
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Birkman
March 22, 2024 07:00 - 45 minutes - 62.5 MBDr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Birkman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to l...
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman
March 22, 2024 07:00 - 45 minutes - 62.5 MBDr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community member, Ricardo Ramirez. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to l...
Highlights from ASH with Dr. Akshat Jain
March 08, 2024 08:00 - 44 minutes - 61.1 MBWe’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Se...
HFA CEO Dan Kelsey and Rare Disease Day tribute
February 23, 2024 08:00 - 1 hour - 94.8 MBHFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Check out the Everyday Life Foundation hosting Bombardier Blood Everyday Life Foundation...
NBDF welcomes new CEO; HFA responds
February 09, 2024 08:00 - 28 minutes - 40.1 MBNBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It’s a Whole New World Gene Therapy Segment brought to you...
Preserving Tainted Blood History and Bath Bleeds
January 26, 2024 08:00 - 49 minutes - 68.6 MBWe’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed. Show Notes: Subscribe: The BloodStream Podcast To learn more about the Committee of Ten Thousand and to get involved, visit www.COTT1.org Presenting Sponsor: Takeda, visit bleedi...
Shakeup at HFA and a brand new Gene Therapy segment!
January 12, 2024 08:00 - 45 minutes - 63.1 MBIt’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on gene therapy (whoo!) - all this and more! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleed...
SNL screws up sickle cell.
January 04, 2024 08:00 - 40 minutes - 56.3 MBWe’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episode. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and ...
The World Health Organization (WHO) gets it wrong
December 08, 2023 08:00 - 33 minutes - 46.6 MBThe World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and Elite Athletes are pr...
The Dark Side of Resilience + The Gratitude Game
November 24, 2023 08:00 - 44 minutes - 61.2 MBHear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more.
Resisting Change and Holiday Dynamics
November 10, 2023 08:00 - 22 minutes - 30.6 MBAmy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine is presented by ...
Introducing PNH: Facts, Fiction & FYI!
November 03, 2023 20:25 - 21 minutes - 30.3 MBThe BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI. Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. Subscribe to PNH: Facts...
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams
October 27, 2023 14:00 - 35 minutes - 49.5 MBMosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE from Believe Limited. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn...
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset
October 13, 2023 07:00 - 55 minutes - 76.7 MBWe’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner. Show Notes: Subscribe: The BloodStream Podcast 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 an...
Dr. Akshat Jain and NHL coach David Quinn
September 25, 2023 15:59 - 53 minutes - 74.2 MBDr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spotlight on–leadership. Be careful, leaders, we’re coming for ya! Show Notes: Subscribe: The BloodStream Podcast Watch Redefining Impossi...
Embracing Change in Hemophilia Care and Back to School
September 08, 2023 07:00 - 31 minutes - 44.3 MBAmy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subscribe: The BloodStream Podcast Back to School Resources at Steps for Living Sickle Awareness Month Resources Mental Health Matters Too Watch Redefining Impossible for free H...
Patrick and Amy’s BDC Recap!
August 25, 2023 07:00 - 36 minutes - 50.5 MBPatrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Athletes segment that highlights community members from the Redefining Impossible film. Show Notes: Subscribe: The BloodStream Podcast ...
Taylor Swift changes Amy’s life, plus a new segment, and other stuff.
August 11, 2023 07:00 - 27 minutes - 38 MBDon’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I'm Fine presented by @San...
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren
July 27, 2023 07:00 - 35 minutes - 49.5 MBThe National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one! Show Notes: Subscribe: The BloodStream Podcast You can do three practical things to help further the campaign for better treatment for women with bleeding disorders: 1) sign the petition at chan...
It’s here: Gene Therapy for Hemophilia A
July 14, 2023 07:00 - 44 minutes - 61.2 MBPatrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders. Show Notes: Subscribe: The BloodStream Podcast Listen to The Final Summit Season 2 Podcast! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Med...
Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond
June 23, 2023 07:00 - 44 minutes - 62.2 MBJessica Lauren Richmond, co-host of the popular FLOW podcast, joins us to discuss all things menstrual health and Amy finally gets to ask –So, how’s your FLOW? We also have James Maple back with a music and self-expression segment that spotlights on community member, Max Feinstein. Show Notes: Subscribe: The BloodStream Podcast Listen and Subscribe to the FLOW podcast! Share your FLOW story with us! How's Your Flow Calendly Tik Tok @howsyourflow Instagram @howsyour...
World Sickle Cell Day & Sing Me A Story
June 09, 2023 07:00 - 35 minutes - 32.8 MBJoin us as we celebrate World Sickle Cell day on June 19th with contributor Maya Bloomberg, the HemeNP and a conversation with hematologist Dr. Mike Callaghan. Great stuff about equity in healthcare, clinical trial participation, the Sing Me a Story organization, and the Denver Nuggets in the finals. Don’t miss it! Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Sing Me A Story Connect with BloodS...
SHEmophilia, Music, and Michael Bishop
May 25, 2023 21:29 - 41 minutes - 56.8 MBWe’ve got a new “SHEmophilia” audio segment brought to us by CHES, as well as Saverio Cimino featured in today’s music and expression segment. Then, Patricks catches up with community member, Michael Bishop. A great episode! Show Notes: Subscribe: The BloodStream Podcast Saverio Cimino’s Instagram Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. To support CHES's program for women with bleeding disorders, to attend CHES events for individua...
Fitusiran overview with Dr. Guy Young
May 12, 2023 07:00 - 54 minutes - 75.7 MBDr. 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: Subscribe: The BloodStream Podcast Follow Maya Bloomberg @thehemenp Check out https://shelbys...
The Ethics of Gene Therapy and a conversation with Gunnar Esiason
April 28, 2023 07:00 - 1 hour - 84.3 MBGunnar 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: The BloodStream Podcast Learn more about Gunnar Esiason and cystic fibrosis here! Listen to PV Pod: Stories from the Marrow! Check o...
World Hemophilia Day and new music from Tamar Mitchell
April 14, 2023 07:00 - 42 minutes - 39.5 MBA 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: Subscribe: The BloodStream Podcast Celebrate World Hemophilia Day on social media! Check out the Elite Athletes documentary, REDEFINING IMPOSSIBLE trailer here! L...
So, we hit a nerve
March 24, 2023 07:00 - 47 minutes - 66.3 MBPatrick 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: Subscribe: The BloodStream Podcast Check out Bleeding China on Substack by Blood Brother, John Christen Follow the newest BloodStream contributor,...
Own Your Path
March 10, 2023 08:00 - 43 minutes - 62 MBWhat 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: Subscribe: The BloodStream Podcast Take control of your health care with NHFs Own Your Path program! This app...
Rare Disease Day and Living in the Almost
February 24, 2023 08:00 - 51 minutes - 72.5 MBWe 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. About The Infected Blood Inquiry - The Haemophilia Society Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to ...
Dear Hemophilia Community: A Warning
February 17, 2023 08:00 - 42 minutes - 58.4 MBOn 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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on T...
Washington Days and Amy’s Big Win
February 10, 2023 08:00 - 57 minutes - 80.1 MBBloodStream 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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com B...
Connie Montgomery and a Let’s Talk Segment featuring Mike Hargett
February 03, 2023 08:00 - 30 minutes - 42.7 MBBloodStream 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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia.com BloodS...
Dr. Steven Pipe on HEMGENIX, hemophilia B’s first gene therapy
January 27, 2023 08:00 - 44 minutes - 64.4 MBWe’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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Connect with BloodStream Media: BloodStreamMedia....
Legislative wins and losses & CDC’s Aditi Kantipuly
January 13, 2023 08:00 - 38 minutes - 53.4 MBA 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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com ...
A Year in Review with NHF CEO, Len Valentino!
December 23, 2022 08:00 - 57 minutes - 80 MBIt’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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Episode ...
Gene Therapy is Here (Kinda!)
December 09, 2022 08:00 - 47 minutes - 65.6 MBThe 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: Subscribe: ...
It’s gratitude season, plus takeaways from WFH Gene Therapy Roundtables!
November 25, 2022 08:00 - 1 hour - 82.9 MBIn 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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda...
Are patient influencers a good thing?
November 11, 2022 08:00 - 50 minutes - 70 MBA 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: Subscribe: The BloodStream Podcast Prese...
Patrick’s new freedoms and restrictions post-op, plus Michelle Conde and the Glanzmann's Research Foundation
October 28, 2022 07:00 - 58 minutes - 81 MBPatrick 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: Subscribe: The BloodStream Podcast Check out the work Glanzmann's Research Foundation is doing!...
LGBTQ+ health issues w/ Dr. Nathan Connell and a vWD story of first pregnancy, labor, and delivery
October 14, 2022 07:00 - 57 minutes - 79.5 MBOn 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: Subscribe: The BloodStream Pod...
Panel: Diversity, Equity & Inclusion in bleeding disorders, plus “living in the moment.”
September 23, 2022 12:23 - 1 hour - 116 MBJames 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: Subscribe: The BloodStream Podcast Article: Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement Presenting Sponsor: - Takeda, visit ...
Pain, Mental Health, & Life Updates w/ Cazandra Campos-Macdonald & Laurence Woollard
September 09, 2022 07:00 - 41 minutes - 56.8 MBBloodStream 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. Subscribe to BloodStream Podcast Listen to the latest from BloodStream’s FLOW podcast Listen to...
The Most Common Bleeding Disorder You’ve Never Heard Of
August 26, 2022 07:00 - 50 minutes - 115 MBAmy 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 le...
A women’s movement’s a brewin’
August 12, 2022 07:00 - 45 minutes - 104 MBThere 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 [email protected]. Show Notes: ...
Sexual health and bleeding disorders
July 22, 2022 07:00 - 50 minutes - 116 MBBloodStream 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: Subscribe to BloodStream Podcast Sex...
The Making of The Final Summit and Science Making a Difference in Rare Disease
July 08, 2022 07:00 - 1 hour - 182 MBComedy 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: Subscribe to BloodStream Podcast Connect with BloodStream Media: BloodStreamMedia.com...
Thalassemia’s dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari, plus aging and changing on Let’s Talk
June 24, 2022 07:00 - 1 hour - 141 MBPatrick 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 abo...
Rare Disease Podcasters on Patient-Centricity and a new segment of The Well!
June 10, 2022 07:00 - 1 hour - 167 MBPatrick 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 Every...
Women prioritized at World Congress and coping with loss for Mental Health month
May 27, 2022 07:00 - 44 minutes - 103 MBWomen 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...