Download the App!
show episodes
 
Artwork

1
BloodStream

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно+
 
BloodStream 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: Ta ...
  continue reading
 
Artwork

1
Cheat Codes: A Sickle Cell Podcast

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно
 
Cheat Codes is a podcast about sickle cell disease and is intended for patients, caregivers, providers, and the greater community of people who are impacted by it. Each episode of Cheat Codes: A Sickle Cell Podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the sickle cell community. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Cheat Codes: A Sickle C ...
  continue reading
 
Just Listen: Voices of PK Deficiency is a podcast about PK deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PK deficiency. Each episode of the Just Listen podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community. Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD. Join a ...
  continue reading
 
Artwork
 
Welcome to Gut Matters: Discoveries and Innovations, a podcast dedicated to helping IBS patients take back control of their symptoms and lives. Hosted by Johannah Ruddy, M.Ed., IBS patient advocate and researcher, and Dr. Andrea Shin, a gastroenterologist and IBS expert, this show dives deep into digestive health. Join us as we share inspiring patient stories, chat with guest experts, and deliver the latest insights on managing IBS—all with a dash of humor. Whether you're a patient or a heal ...
  continue reading
 
Artwork

1
The Final Summit

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно
 
What do you do when you’ve achieved your dreams only to realize- your work’s just begun? In January of 2018, Chris Bombardier became the first person with severe hemophilia to complete The Seven Summits. It was the end of an adventure, and the start of a whole new chapter in Chris’s life. From the team behind the documentary Bombardier Blood comes a podcast for adventurers, bleeders, and anyone who’s ever chased a dream. Subscribe to BloodStream Media’s The Final Summit wherever you get your ...
  continue reading
 
Artwork
 
Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagra ...
  continue reading
 
Artwork
 
Ask The Expert from BloodStream Media is a podcast series features hematologists and other healthcare experts answering listener-submitted questions about hemophilia, von willebrand disease, and other inherited bleeding disorders. Learn more at BloodStreamMedia.com. The content contained within Ask The Expert is for informational purposes only. Please consult your health care provider before making any decisions about treatment.
  continue reading
 
Artwork

1
PV Pod: Stories from the Marrow

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно
 
The PV Pod: Stories from the Marrow is a podcast about Polycythemia Vera (PV) and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PV. Each episode, The PV Pod: Stories from the Marrow strives to provide listeners with critical education, the latest scientific updates, and voices from the community. Transparency Statement: The PV Pod: Stories from the Marrow is produced by Believe Limited and made possible by PharmaEssentia. Visit Pharm ...
  continue reading
 
Artwork

1
PNH: Facts, Fiction & FYI

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно
 
Content independently created by BloodStream Media. Novartis is our exclusive advertising partner. Introducing "PNH: Facts, Fiction & FYI," a limited series that unveils the enigmatic realm of Paroxysmal Nocturnal Hemoglobinuria (PNH). Join us as we journey through real stories, medical insights, and groundbreaking advancements, offering a comprehensive view of PNH. Explore the lives touched by this rare blood disorder and discover the intersection of facts, fiction, and must-know informatio ...
  continue reading
 
Artwork

1
The Pain Podcast

BloodStream Media

Unsubscribe
Unsubscribe
Ежемесячно
 
Acute pain. Chronic pain. Physical pain. Emotional pain. Psychological pain. Spiritual pain. Pain is a part of life, it’s everywhere, and it can be devastating. There are many tools, techniques, and resources for managing it, but what do we actually understand about pain? The Pain Podcast explores this and other pain-related questions. Subscribe now, and tell a friend about us! Produced by BloodStream Media. Presenting Sponsor: Tremeau Pharmaceuticals.
  continue reading
 
Artwork

1
Why The Artist Bleeds

VENUS BLEEDS

Unsubscribe
Unsubscribe
Ежемесячно
 
Delving deep into the brain and bloodstream of artists, creators and creatives. Join Venus Bleeds, a queer immigrant musician and visual artist discuss physical, mental and environmental systems that affect creativity, and artistic identity with renowned artists from all over the world. This is a show about mental health, patriarchy, feminism, creativity and productivity. We are humbled by the beauty of communication, and the power of sharing each other's voices. What does it mean to be a sl ...
  continue reading
 
Loading …
show series
 
NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y’all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I’m Fine segment with Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Sub…
  continue reading
 
On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain h…
  continue reading
 
On this first episode of Gut Matters: Discoveries and Innovations, hosts Johannah Ruddy, M.Ed., and Dr. Andrea Shin dive deep into the complexities of IBS-C (Irritable Bowel Syndrome with Constipation). Together, they dispel myths, discuss common symptoms, and break down what it means to live with this often misunderstood condition. Whether you’ve …
  continue reading
 
On this episode of Cheat Codes, Dr. Z and Dr. C are joined by Tabatha McGee, Executive Director of the Sickle Cell Foundation of Georgia. Tabatha shares her remarkable journey from systems engineer to leading the foundation, driven by a personal mission to enhance the lives of sickle cell warriors. The discussion delves into innovative programs lik…
  continue reading
 
Welcome to Gut Matters: Discoveries and Innovations, a podcast dedicated to helping IBS patients take back control of their symptoms and lives. Hosted by Johannah Ruddy, M.Ed., IBS patient advocate and researcher, and Dr. Andrea Shin, a gastroenterologist and IBS expert, this show dives deep into digestive health. Join us as we share inspiring pati…
  continue reading
 
Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We’ve got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA’s Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions. Presenting Sponsor: Takeda, visit bleedi…
  continue reading
 
On this episode, Dr. Z and Dr. C welcome Dr. Julia Xu, a rising star in the field of sickle cell disease. Dr. Xu shares her inspiring journey from Omaha, Nebraska, to her current role at the University of Pittsburgh. The discussion covers her extensive background in global health, her research on anemia in sickle cell disease, and the impactful men…
  continue reading
 
We recap NBDF’s BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I’m Fine featuring guest host Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Help celebrate International Plasma Awareness Week! …
  continue reading
 
On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferri…
  continue reading
 
We’re back with Gary Linehan, an avid hiker living with polycythemia vera (PV) to talk about his incredible hike around Mont Blanc. Gary shares his journey, the challenges he faced, and the heartwarming connections he made along the way, emphasizing the importance of living life to the fullest despite a PV diagnosis. Tune in to hear Gary's wisdom, …
  continue reading
 
On this episode, host Dr. Rachel Grace interviews Dr. Satheesh Chonat, a pediatric hematologist and expert in red cell disorders. They discuss Dr. Chonat’s career path and focus on the complexities of managing anemia in patients with pyruvate kinase deficiency, emphasizing the role of the spleen. They explore why splenectomy might be considered, po…
  continue reading
 
Too often we see inspirational stories as someone who achieved their dream despite something. Despite a setback. Despite a condition. Despite a bleeding disorder. Not today. Chris talks with clothing designer Christian Harris who used his bleeding disorder to inspire his thesis and unique line of clothes… all about the Hapsburgs, and his personal h…
  continue reading
 
Coming to you LIVE from NBDF’s Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don’t wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview…
  continue reading
 
In this special “Lunch and Learn” session sponsored by the Agios Diversity Council, Dr. Simone Uwan shares her inspiring journey living with and advocating for sickle cell disease. Dr. Uwan discusses her background, achievements in medicine and advocacy, and her personal experiences with misdiagnosis and the challenges faced by sickle cell patients…
  continue reading
 
Your bleeding disorder doesn’t define you. But it is a part of who you are. And the only way to learn your potential, is to take that first step. Chris talks with Paul Sebastian and Sam Kishyo about their first steps, and learning that the journey can only take you as far as you’re willing to go. The Final Summit was also made possible by support f…
  continue reading
 
On this episode, Gary Linehan, an experienced educator and avid hiker, shares his profound journey from being diagnosed with polycythemia vera (PV) in 2021 to embarking on ambitious hiking adventures, including the Tour Mont Blanc. Linehan discusses his initial symptoms, the challenges of misdiagnosis, and the crucial support system that includes h…
  continue reading
 
Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the chal…
  continue reading
 
In this new episode with Dubai-based photographer Hady Afif, we discuss the art industry, social media, and the significance of culture within an artist's work. Is it our duty to portray our heritage? Why is everyone suddenly so aloof and famous? What makes you a "real artist"? Do we have to portray a facade in real life for people to take us serio…
  continue reading
 
Inside the mind of everyone with a bleeding disorder exist two unique mindsets: “Why is this happening to me?” And “If I can take on this, I can take on the world.” Today, Chris talks with chef Mike Hargett and pediatrician Dr. Vyankatesh Pralikar about their unique journeys of facing their own doubts, and coming out stronger on the other side. The…
  continue reading
 
On this episode of Thal Pals we’re live in Atlanta, Georgia for the 2024 Cooley’s Anemia Foundation’s 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals…
  continue reading
 
Stories are more than tall tales. They help us relate. They inspire. They educate. They make us feel less alone. Chris talks with Chetan Motiwaras and Patrick James Lynch about the power of story when it comes to bleeding disorders, and how their drive to tell stories led them on their own life’s journey. The Final Summit was also made possible by …
  continue reading
 
Patrick survives his first tornado warning and we’ve got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show …
  continue reading
 
Every story has a beginning. And every journey starts with that first step. Chris talks with Trevor Martin & Destiny Danaye, two budding artists with bleeding disorders who, despite their young age, have lived an entire life before their journey even began. The Final Summit was also made possible by support from Genentech. Visit GenentechHemophilia…
  continue reading
 
For many of us, the mountains we climb aren’t physical. They’re spiritual, mental, psychological, and ultimately inspirational. In this season, we’re hearing from people with bleeding disorders from all over the world, who faced their own final summit, and fought for their dreams despite all obstacles. Tune into Season Three of The Final Summit. Co…
  continue reading
 
Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I’m Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plu…
  continue reading
 
On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the impor…
  continue reading
 
On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emp…
  continue reading
 
Holly John, Agios’ Senior Director of Patient Advocacy, has a partner working with her on sickle cell disease patient advocacy! On this episode of Cheat Codes: A Sickle Cell Podcast, Dr. Z and Dr. C Janie Davis. Janie is the Director of Patient Advocacy at Agios Pharmaceuticals and is excited to work with the sickle cell community. SHOW DESCRIPTION…
  continue reading
 
On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role…
  continue reading
 
On this episode, Dr. Douglas Tremblay from Mount Sinai School of Medicine in New York City discusses progression in polycythemia vera (PV). He elaborates on the transformation of PV into other diseases such as myelofibrosis and acute myeloid leukemia (AML), different ways progression can be defined, and the factors that contribute to the risk of pr…
  continue reading
 
Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment? Show Notes: Subscribe: The BloodStream Po…
  continue reading
 
Join Dr. Z and Dr. C as they host a live panel from Florida with key figures from various community-based organizations (CBOs) dedicated to supporting those affected by sickle cell disease. Panelists share insights on the vital roles CBOs play, their unique challenges, successes, and the importance of collaborations with healthcare providers, pharm…
  continue reading
 
On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The e…
  continue reading
 
On this episode, Dr. Rachael Grace talks with the King family. Jennifer and Jerry King have been raising William and Lily. Both have pyruvate kinase deficiency and we discuss how they’ve managed the disease with their two children.. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended f…
  continue reading
 
Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial do…
  continue reading
 
On this episode of Cheat Codes: A Sickle Cell Podcast, we’re coming to you again from Detroit, Michigan. Here, the docs sit down with Dr. Alex Glaros. Dr. Glaros is a Pediatric Hematologist-Oncologist at Children’s Hospital of Michigan. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people…
  continue reading
 
Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and…
  continue reading
 
On this episode, Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis. They discuss Travis’ diagnosis, actively involving him in his own care and how to navigate life as a teenager with pyruvate kinase deficiency. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended fo…
  continue reading
 
Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!). Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, vi…
  continue reading
 
On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia). Connect w…
  continue reading
 
Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Sho…
  continue reading
 
On this episode of Cheat Codes: A Sickle Cell Podcast, we’re live in the Motor City: Detroit, Michigan. This live event featured Dr. Z and Dr. C interviewing a panel of esteemed guests including Davinna Christian, Dr. Alex Glaros and Clifton Kirkman, II discussing clinical trial awareness. We also hear from Dr. Wanda Whitten-Shurney at the end of t…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
Loading …

Краткое руководство