Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). This podcast is about setting sights beyond the challenges in life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.
Two Rare Mama Bears, a Cure CMD Podcast – where we discuss all things Congenital Muscular Dystrophy and Rare Disease…All subtypes, ages, abilities and topics!
Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease.
This podcast features people with chronic health conditions as they share their positive coping tools and practitioners of mind-body and/or alternative health who have helped people with a chronic health condition.
Openly Rare with Paul Kidwell is a monthly podcast covering all aspects of rare diseases and will feature conversations with newsmakers and leaders from the world of biomedical and academic research, patient engagement, caregiving, rare disease patients and their families, as well as others who in some way have been touched by the growing number of rare illnesses.
Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone.
A weekly podcast highlighting the most important news developments and its impact on the orphan drug, cell and gene therapy world including research advancements, corporate events and regulatory changes.
We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis.
Pediatric neurologist Elizabeth Kichula, MD, PhD, discusses the pathophysiology and clinical presentation of spinal muscular atrophy (SMA), prenatal screening, diagnosis and treatment for this neurodegenerative disease. Published November 2019.