Evan's Life is Turned Upside Down by Diagnosis of PNH
Evan biked daily. He had no symptoms. The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.
Podcast Episodes
Our patients, families, and caregivers have been asking us for more ways to learn about rare blood cancers and bone marrow failure diseases. So, we're coming to you today, thanks to generous support from individual donors and our corporate partners.
Approval of Fabhalta (iptacopan), Oral Medication for Patients with PNH
What does this FDA approval mean for patients with PNH? Find out how this oral medication, Fabhalta, could replace one of the infusion treatments in this interview with Dr. Bart Scott.
FDA approval of Tibsovo with Dr. Amir Fathi
Here is a discussion about recent FDA approval of Tibsovo for Relapsed/Refractory MDS with Dr. Amir Fathi, who is an Associate Professor of Medicine at Harvard Medical School and the Director of the Leukemia Program at Massachusetts General Hospital.
Expanded Access to Reblozyl® for Patients with Dr. Guillermo Garcia Manero
This episode focuses on the US Food and Drug Administration expanded access approval of luspatercept or Reblozyl with Dr. Guillermo Garcia-Manero, Chief of the Section of MDS in the Department of Leukemia at MD Anderson Cancer Center in Houston.
The Importance of Getting Second Opinion
Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. He also shares his own perspective about asking for a second opinion, recommending that patients do select this option.
Living with PNH: Understanding the Family Medical Leave Act
What type of documentation do you need to take advantage of the Family Medical Leave Act? Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.
Understanding The Americans with Disabilities Act, for Patients
Learn about the Americans with Disabilities Act and how it applies to patients. Attorney Chris Mills shares his expertise in this episode.
How to Manage Chemo Brain with Dr. Jorg Dietrich
What is "Chemo Brain" and how is it managed? Find out the best approaches for dealing with this common side effect in this recording with Dr. Jorg Dietrich.
Meningitis and PNH with Dr. Bhumika Patel
Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.
COVID-19 And Vaccines For Patients - with Dr. Veronica Dioverti Prono
When should patients be vaccinated, and with which version of the COVID-19 Vaccine? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.
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