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.
One Rare Experience, a first of its kind summit for 25 young adults with rare disease. With a pilot location of NH, at the Barbara C Harris conference center, we intend to gather motivated adults between the ages of 18 and 30 for a one of a kind week of adapted recreation, mentorship, life skills learning and most importantly social connection building.
Programming offered will focused on lifestyle and health, expression, art, sports, and employment as well as free time to network and form friendships.
With a successful launch in 2020, One Rare plans to expand services to offer week long experiences in additional locations, as well as weekend getaways with offerings that include adaptive sports and recreation, career training and internships, and educational opportunities.
To improve the lives and futures of young adults living with rare disease, through education, recreation and peer support.