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Apr. 28, 2021


Adolescent and Young Adult Rare Disease: Seth Rotberg’s Story

Posted by Valaree DonFrancesco

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.

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