One Rare

With innovation and better care, those with rare disease are living longer, and healthier lives than ever before. While there are many supportive programs and camps intended for children and their families, it is often those teens and young adults aging out of the programs who need them the most. One Rare was founded by a mother of two young adults with Duchenne Muscular Dystrophy after significant frustration with the lack of recreational, social and educational activities available to foster independence in her sons and others like them. The goal of One Rare will be an organization staffed by young adults with rare disease and their supporters, serving young adults with rare disease. This provides the dual benefit of providing employment experience and opportunities to a population that is often overlooked, and support to the same community.