Adolescent and Young Adult Rare Disease: Seth Rotberg's Story
Listen now
Description
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Our Odyssey. Seth lost his mother to Huntington’s Disease several years after she was initially diagnosed while he was in High School. He also tested positive for the disease along the way, bringing challenges and opportunities to the life in front of him. His mission is to provide support and resources to the AYA rare disease community to help them reach their full potential. Enjoy the show.
More Episodes
Published 06/22/22
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drugs. Over 350 million people worldwide have a rare disease, yet only 10% of rare diseases have an...
Published 06/22/22
You're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated...
Published 06/08/22