PV Pod: Stories from the Marrow, Episode 7: What To Know About Progession In Polycythemia Vera
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 progression. Dr. Tremblay also addresses the significant concern patients have regarding disease progression and the challenges in predicting and preventing it. Furthermore, he explores the role of the JAK2 mutation, inflammation in the bone marrow, and various treatment strategies aimed at controlling the disease and preventing its progression.
I'm Fine Segment: Factor Levels with Patrick
Nowadays, factor levels are a whole thing. On the latest I’m Fine, hear from Patrick on his thoughts about the ever-evolving issue of factor levels and that I’m Fine mentality.
Listen, Rate, Review, and Subscribe where you get your podcasts!
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
I’m Fine is presented by Sanofi
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
Social Workers Matter
HTC Social workers are legit and Patrick proves it by talking with legends, Kathaleen Schnur and Dianne Bartlett. On the latest BloodStream!
Listen, Rate, Review, and Subscribe where you get your podcasts!
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
Hear more on the latest Thal Pals about Cooley's Care Walks. We’ll discuss how to get involved, the impact of fundraising, and the diverse activities surrounding these walks.
Available now: https://pod.link/1639436269
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.
Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.
This podcast is not intended as medical advice. Please consult your healthcare team with any treatment related questions.
#RedBloodCellDisorder #HereditaryDisease
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 progression. Dr. Tremblay also addresses the significant concern patients have regarding disease progression and the challenges in predicting and preventing it. Furthermore, he explores the role of the JAK2 mutation, inflammation in the bone marrow, and various treatment strategies aimed at controlling the disease and preventing its progression.
https://bit.ly/3LcBCIk
Cheat Codes: The Importance of Community-Based Organizations for the SCD Community
We’re with key figures from various community-based organizations (CBOs) that have dedicated their lives to supporting those affected by sickle cell disease. Join Dr. Z and Dr. C as they host a live panel from Florida where our guests share insights on the vital roles CBOs play, their unique challenges, successes, and the importance of collaborations with the SCD community, healthcare providers, pharmaceutical companies, and legislators.
Panelists Include:
Rae Blaylark
Howard French
TaLana Hughes
Tabatha McGee
Dr. Wanda Whitten-Shurney
DeMitrious Wyant
Listen, rate, review, and subscribe wherever you get your podcasts!
Or by clicking here: https://pod.link/1488189351
Cheat Codes is a podcast for the sickle cell community that brings listeners a series of segments and interviews packed with critical education that patients and families need to know, as well as updates and clarifications from the social media "buzz" around sickle cell. Hosted by Ahmar U. Zaidi, MD (Dr. Z) & Michael U Callaghan, MD (Dr. C).
Cheat Codes is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.
This podcast is not intended as medical advice. Please consult your healthcare team with any treatment related questions.
#RedBloodCellDisorder #HereditaryDisease
What DON'T social workers do? On the next BloodStream!
Listen, Rate, Review, and Subscribe where you get your podcasts!
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
I’m Fine is presented by Sanofi US
Segment Sponsorship by Genentech
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
The Multi-Faceted Role of HTC Social Workers
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?
Listen, Rate, Review, and Subscribe where you get your podcasts!
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
I’m Fine is presented by Sanofi US
Segment Sponsorship by Genentech
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
During his appearance on BloodStream, Mason Bobro (he/him) called for care providers to respect and listen to LGBTQ+ patients. ️In retrospect, this statement perfectly aligns with this year's #WorldHemophiliaDay theme of equitable access for all.
For more PRIDE listening, head over to the following episodes:
↪️ The LGBTQ+/Bleeding Disorder Experience
https://ow.ly/5waS50RZfoC
↪️ LGBTQ+ Health Issues w/ Dr. Nathan Connell
https://ow.ly/Jmv150RZfoF
#bloodstream #bloodstreampodcast #podcast #lgbtq #pride #happypride #bleedingdisorders #throwback
Thal Pals Episode 18: Cooley's Care Walks
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 episode covers ways to get involved, the impact of fundraising, and the diverse activities surrounding these walks.
Listen, rate, review, and subscribe wherever you get your podcasts!
Or by clicking here: https://pod.link/1639436269
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.
Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.
This podcast is not intended as medical advice. Please consult your healthcare team with any treatment related questions.
#RedBloodCellDisorder #HereditaryDisease
Jennifer and Jerry King discuss the unique challenges of raising multiple children affected by PK deficiency with our host, Dr. Grace. Available now!
Available now: bit.ly/justlisten_podlink
Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase (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: Voices of PK Deficiency podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community.
Just Listen: Voices of PK Deficiency is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.
Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD.
This podcast is not intended as medical advice. Please consult your healthcare team with any treatment related questions.
#RedBloodCellDisorder #HereditaryDisease
Thomas Bartlett, Myasthenia Gravis patient and advocate, shares his story and his thoughts on living with an invisible disorder on the latest BloodStream.
Listen, Rate, Review, and Subscribe: https://bit.ly/thebloodstreampodcast
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World brought to you by CSL
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
We all know nurses tell it like it is. Listen in to Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial dosing of gene therapy for hemophilia B on the latest gene therapy segment!
Listen, Rate, Review, and Subscribe: https://bit.ly/thebloodstreampodcast
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World brought to you by CSL
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
Eduardo Pérez, un científico y bioingeniero que tiene la misión de combinar la genómica y la ciencia de datos para obtener soluciones prácticas y comprender mejor las epilepsias de causa genética.
Escucha y suscríbete! 🎧 👇
https://bit.ly/masqueraras_podlink_social
#masqueraras #salud #podcast #enferma #epilepsia
Life with an Invisible Disorder
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 dosing of gene therapy for hemophiia B. A great episode!
🎧 Listen & Subscribe: https://bit.ly/bloodstreamyt
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World brought to you by @CSLBehring.
#healthcare #hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB
Why yes, Believe Ltd IS one of those companies (GOOD JOB!).
In fact, FLOW is made possible because of the hard working humans at Believe have believed in advocacy in action for over a decade, carving a path for voices in chronic / rare disease-states to be heard. FLOW is Proud to be allied / in such company!
Also, wishing all far and wide a Happy Pride 🏳️🌈
Hear more only on FLOW - straight talk about extreme periods.
https://bit.ly/theflowpodcast
#howsyourflow #menstrualcare #menstrualhealth #policy #periodpolicy #periodtalk #periodpodcast
What is it like living with an invisible chronic disorder? Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, to talk about just that. On the next BloodStream.
Listen, Rate, Review, and Subscribe: https://bit.ly/thebloodstreampodcast
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World brought to you by CSL
#hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare apy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB #healthcare
Life with an Invisible Disorder
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 dosing of gene therapy for hemophiia B. A great episode!
🎧 Listen & Subscribe: https://bit.ly/bloodstreamyt
Presenting Sponsor: #Takeda, visit bleedingdisorders.com to learn more.
It’s a Whole New World brought to you by @CSLBehring.
#healthcare #hemophilia #vwd #bleedingdisorders #raredisease #chronicdisease #haemophilia #hemofilia #sicklecell #podcast #digitalhealth #genetherapy #bloodstreammedia #hemophiliacommunity #hemophiliaA #hemophiliaB
Raising Two Children with PK Deficiency
On this episode, Dr. Rachael Grace talks with the King family about the unique challenges of having multiple family members affected by PK deficiency. Jennifer and Jerry King are raising William and Lily, both have pyruvate kinase deficiency and Dr. Grace discusses how they’ve managed the disease with their two children.
Listen, rate, review, and subscribe wherever you get your podcasts!
Or by clicking here: www.JustListenPod.com
Just Listen: Voices of PK deficiency is a podcast about pyruvate kinase (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: Voices of PK deficiency podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community.
Just Listen: Voices of PK deficiency is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.
Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD.
This podcast is not intended as medical advice. Please consult your healthcare team with any treatment related questions.
#RedBloodCellDisorder #HereditaryDisease
De Chile al mundo (y de vuelta a Chile): Hablando de la investigación aplicada a las epilepsias raras con Eduardo Perez
En este episodio conversamos con Eduardo Pérez, un científico chileno quien se define como "empeñado en desentrañar los misterios genéticos de la epilepsia y los trastornos del neurodesarrollo". En esta entrevista llena de información valiosa, Eduardo nos cuenta cómo su trabajo de investigación en el área de la genética lo llevó de Chile a Alemania y luego a Estados Unidos, solo para retornar a Chile y liderar el Laboratorio de Neurogenética Clínica (LNGC). Eduardo nos habla sobre cómo él y su equipo están constantemente creando herramientas para interpretar datos genéticos e iniciando colaboraciones en toda América Latina, donde la epilepsia es prevalente pero poco investigada.
¡Una entrevista que no te puedes perder!
Escucha y suscríbete! 🎧 👇
https://bit.ly/masqueraras_podlink_social
#español #podcast #enfermagem
