by Madaline Spencer | Jun 17, 2024
Melody Joy Paine, founder of Imperfect JOY, discusses how she captures the lies of patients with rare diseases through photography and filmmaking. Melody tries to emphasize the person when capturing their story by focusing on what makes them who they...
by Madaline Spencer | Jun 12, 2024
Jessica Klein, Consultant for Tin Soldiers Global, discusses fibrodysplasia ossificans progressiva (FOP). FOP is a rare disorder in which skeletal muscle and connective tissue are gradually replaced by bone. This condition leads to bone formation outside...
by Madaline Spencer | Jun 10, 2024
Frank Rivera, Founder of Sarcoidosis of Long Island and Stronger Than Sarcoidosis and patient advocate, discusses how his organization fulfills the unmet needs of sarcoidosis patients. Sarcoidosis is a rare inflammatory disease characterized by the...
by Madaline Spencer | Jun 4, 2024
David Gusick, Founder of Somebody To Talk To, discusses mental health in patients with rare diseases. Somebody To Talk To focuses on providing mental health resources and support for patients, especially those with Duchenne muscular dystrophy. Through...
by Madaline Spencer | May 31, 2024
Amy Gray, Chief Executive Officer of the Undiagnosed Diseases Network Foundation (UDNF), discusses the organization and what they do for patients of undiagnosed rare diseases. As Ms. Gray explains, the journey to a diagnosis can be a long and...
