Best Nationalhemophiliafoundation Podcasts (2024)

1
New NBDF CEO, Phil Gattone 38:55

7d ago38:55

38:55

We 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 B…

1
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman 45:09

28d ago45:09

45:09

Dr. 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 m…

1
Highlights from ASH with Dr. Akshat Jain 44:04

1M ago44:04

44:04

We’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 …

1
HFA CEO Dan Kelsey and Rare Disease Day tribute 1:08:50

2M ago1:08:50

1:08:50

HFA 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 b…

1
NBDF welcomes new CEO; HFA responds 28:50

2M ago28:50

28:50

NBFD 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 Present…

1
Preserving Tainted Blood History and Bath Bleeds 49:35

3M ago49:35

49:35

We’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 Podca…

1
Shakeup at HFA and a brand new Gene Therapy segment! 45:27

3M ago45:27

45:27

It’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 …

1
SNL screws up sickle cell. 40:35

4M ago40:35

40:35

We’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 episod…

1
The World Health Organization (WHO) gets it wrong 33:41

5M ago33:41

33:41

The 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: Subscr…

1
The Dark Side of Resilience + The Gratitude Game 44:10

5M ago44:10

44:10

Hear 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…

1
Resisting Change and Holiday Dynamics 22:08

5M ago22:08

22:08

Amy 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: S…

1
Introducing PNH: Facts, Fiction & FYI! 21:57

6M ago21:57

21:57

The 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…

1
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams 35:34

6M ago35:34

35:34

Mosi 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 f…

1
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset 55:29

6M ago55:29

55:29

We’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…

1
Dr. Akshat Jain and NHL coach David Quinn 53:34

7M ago53:34

53:34

Dr. 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 spot…

1
Embracing Change in Hemophilia Care and Back to School 31:58

8M ago31:58

31:58

Amy 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 …

1
Patrick and Amy’s BDC Recap! 36:14

8M ago36:14

36:14

Patrick 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 Ath…

1
Taylor Swift changes Amy’s life, plus a new segment, and other stuff. 27:25

9M ago27:25

27:25

Don’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: Subscri…

1
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren 35:48

9M ago35:48

35:48

The 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 pra…

1
It’s here: Gene Therapy for Hemophilia A 44:09

9M ago44:09

44:09

Patrick 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 S…

1
Music w/ Max Feinstein and FLOW with Jessica Lauren Richmond 44:52

10M ago44:52

44:52

Jessica 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…

1
World Sickle Cell Day & Sing Me A Story 35:18

11M ago35:18

35:18

Join 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 BloodS…

1
SHEmophilia, Music, and Michael Bishop 41:06

11M ago41:06

41:06

We’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…

1
Fitusiran overview with Dr. Guy Young 54:26

12M ago54:26

54:26

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…

1
The Ethics of Gene Therapy and a conversation with Gunnar Esiason 1:00:42

12M ago1:00:42

1:00:42

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: The BloodStrea…

1
World Hemophilia Day and new music from Tamar Mitchell 42:26

1y ago42:26

42:26

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: Subscribe: The BloodStream Podcast Celebrate…

1
So, we hit a nerve 47:32

1y ago47:32

47:32

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: Subscribe: The Blo…

1
Own Your Path 43:19

1y ago43:19

43:19

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 epis…

1
Rare Disease Day and Living in the Almost 51:56

1y ago51:56

51:56

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. About The Infected Blood Inquiry …

1
Dear Hemophilia Community: A Warning 42:08

1y ago42:08

42:08

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: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleed…

1
Washington Days and Amy’s Big Win 57:57

1y ago57:57

57:57

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: Subscribe: The BloodStream Pod…

1
Connie Montgomery and a Let’s Talk Segment featuring Mike Hargett 30:03

1y ago30:03

30:03

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: Subscribe: The BloodStream Podcast Presentin…

1
Dr. Steven Pipe on HEMGENIX, hemophilia B’s first gene therapy 44:48

1y ago44:48

44:48

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: Subscribe: The BloodStream Podcas…

1
Legislative wins and losses & CDC’s Aditi Kantipuly 38:35

1+ y ago38:35

38:35

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 y…

1
A Year in Review with NHF CEO, Len Valentino! 57:38

1+ y ago57:38

57:38

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: Subsc…

1
Gene Therapy is Here (Kinda!) 47:17

1+ y ago47:17

47:17

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 con…

1
It’s gratitude season, plus takeaways from WFH Gene Therapy Roundtables! 1:00:00

1+ y ago1:00:00

1:00:00

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 yea…

1
Are patient influencers a good thing? 50:46

1+ y ago50:46

50:46

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 a…

1
Patrick’s new freedoms and restrictions post-op, plus Michelle Conde and the Glanzmann's Research Foundation 58:28

1+ y ago58:28

58:28

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 ack…

1
LGBTQ+ health issues w/ Dr. Nathan Connell and a vWD story of first pregnancy, labor, and delivery 57:37

1+ y ago57:37

57:37

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 u…

1
Panel: Diversity, Equity & Inclusion in bleeding disorders, plus “living in the moment.” 1:24:07

1+ y ago1:24:07

1:24:07

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: Subscribe: The BloodStream Podcast Article…

1
Pain, Mental Health, & Life Updates w/ Cazandra Campos-Macdonald & Laurence Woollard 41:20

1+ y ago41:20

41:20

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 bleedin…

1
The Most Common Bleeding Disorder You’ve Never Heard Of 50:15

1+ y ago50:15

50:15

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…

1
A women’s movement’s a brewin’ 45:14

1+ y ago45:14

45:14

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) Episod…

1
Sexual health and bleeding disorders 50:29

2y ago50:29

50:29

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,…

1
The Making of The Final Summit and Science Making a Difference in Rare Disease 1:19:41

2y ago1:19:41

1:19:41

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 ge…

1
Thalassemia’s dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari, plus aging and changing on Let’s Talk 1:01:48

2y ago1:01:48

1:01:48

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…

1
Rare Disease Podcasters on Patient-Centricity and a new segment of The Well! 1:13:01

2y ago1:13:01

1:13:01

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 Jes…

1
Women prioritized at World Congress and coping with loss for Mental Health month 44:50

2y ago44:50

44:50

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 Ste…

1
Journey to Joint Health Panel - LIVE from HFA! 1:16:05

2y ago1:16:05

1:16:05

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…

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Nationalhemophiliafoundation Podcasts

Podcasts Worth a Listen

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