Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria
Damian describes his story of diagnosis, treatment, and bone marrow transplant in this compelling episode.
Director for Patient Services, Leigh Clark, interviews Ron Duncan about his journey with Pure Red Cell Aphasia, or PRCA.
Dr. Roma Rajput explains the origins and treatment of hepatitis-associated Aplastic Anemia in this AAMDSIF Podcast for Patients Episode.
AAMDSIF Director of Patient Programs, Leigh Clark, asks Brian about his life before diagnosis, during "watch and wait," through transplant, to now. Listen here to his myelodysplastic syndromes, or MDS, patient journey.
AAMDSIF Director of Patient Services, Leigh Clark, asks Mario about his journey with Aplastic Anemia. The conversation includes treatment and survivorship.
Evan was biking 20 miles each day, when his dad noticed physical changes. The diagnosis: PNH, or paroxysmal nocturnal hemoglobinuria. Listen to Evan describe his journey with this rare disease in this episode of Podcast for Patients.
Dr. Bart Scott explains how the approval for the oral medication, Fabhalta, or iptacopan, may be beneficial for particular patients with PNH
Discussion about recent FDA approval of Tibsovo 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.
Dr. Guillermo Garcia Manero explains the new authorization for use of the drug, Reblozyl®.
Attorney Christopher Mills explains to patients the rights and responsibilities of The Americans with Disabilities Act.
Learn about your responsibilities and rights under the federal Family Medical Leave Act with attorney, Christopher Mills.
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. #MDS #aplasticanemia #bonemarrowfailure #bloodcancer
What is "chemo brain" and how is it managed? Listen to this recording to discover the best approaches to dealing with this common side effect, with Dr. Jorg Dietrich
Dr. Bhumika Patel explains why meningitis can occur in patients with PNH and how it is both treated or prevented.
When should patients be vaccinated, and with which version? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.
What is a clinical trial? When should a patient consider participating? Olga Rios, RN, at the NHLBI at the National Institutes of Health, answers these questions.
Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue. Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.
What is Intermediate-Risk MDS, or Myelodysplastic Syndromes? Learn about this diagnosis with expert Dr. Swapna Thota in this recording.
Dr. Joshua Zeidner explains why it is critical for patients with MDS to receive an accurate diagnosis. He describes the steps to determine the presence of the disease, and also discusses some of the treatments available. #myelodysplasticsyndromes