Rare Awareness Radio

Empowering stories from those who know best

Amplifying the voices of those united against rare diseases

“Rare Awareness Radio,” an ongoing podcast, amplifies voices from the rare disease community. Each episode features unique perspectives from patients, caregivers, healthcare providers, researchers, or advocates. Through candid conversations and personal stories, we hear lessons learned, successes, and challenges to address.

The Founder Series

Discover the journeys of rare disease advocates

EP(F)1: Michael Michaelis & The OMSLife Foundation

Mike Michaelis, founder and president of The OMSLife Foundation, established the organization in 2009 after his granddaughter’s OMS diagnosis. The foundation aims to support patients and caregivers, raise OMS awareness, and fund research. Their OMS Patient Reported Natural History Study, developed in collaboration with NORD and funded by the FDA, currently has nearly 400 registrants. Mike is dedicated to connecting patients with top care providers and has expressed gratitude for interacting with numerous OMS patients, families, specialists, and researchers globally. For more information, visit omslifefoundation.org.

EP(F)2: Jeff Kramer & The Chondrosarcoma Foundation

Jeffrey T. Kramer, M.S. created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. He combines his 24 years experience in substance abuse counseling, communication, and marketing with his experience in broadcasting to produce film and videos. In addition, Jeffrey has been a certified Emergency Medical Technician and a Volunteer Firefighter for the Prince George’s County Fire Department. Mr. Kramer operates his own multimedia production company called Kramer Communications. For more information, please visit csfshayna.org.

EP(F)3: Carolina Sommer & The Born a Hero Foundation

Carolina Sommer is the CEO and founder of the Born A Hero Research Foundation and co-founder of the Northwest Rare Disease Coalition. A dedicated advocate, author, and lobbyist, Carolina’s journey in the rare disease community began with her daughter’s diagnosis of Pfeiffer syndrome. She has since become a leading voice for rare disease awareness, passionately working to support families and drive forward meaningful change through community-focused initiatives, patient-led research, and policy advocacy. For additional information, please visit bornahero.org.