Patient Advocate Spotlight: Mark Rudolph Supports and Connects the Dystonia Community Dakota Campbell Tue, 05/17/2022 - 09:44
Headshot of Mark Rudolph

Mark Rudolph serves as president of the Dystonia Medical Research Foundation (DMRF), a patient advocacy group that supports individuals and families affected by dystonia. The dystonias are a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his journey to rare disease advocacy, impactful work by the DMRF, and collaboration with the Dystonia Coalition (DC).

Patient Advocate Spotlight: Tracy Hart Fosters Connections to Help Patients with Osteogenesis Imperfecta Dakota Campbell Tue, 01/26/2021 - 17:27
Tracy Hart
Tracy Hart, CEO of the OI Foundation (left)
with Ingunn Westerheim, president of the
OI Federation Europe

Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation, serves as chair of the RDCRN’s Coalition of Patient Advocacy Groups. Here, she talks about her work as a rare disease advocate, the founding of the Brittle Bone Disorders Consortium (BBD), and their work in rare disease patient advocacy and research.