One Rare

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. One Rare was founded in 2019 by a mother and her adult son living with Duchene muscular dystrophy. The goal is to provide resources and opportunities that would improve the lives and futures of young adults, aged 18-35, living with rare disease, through education, mentoring, recreation and peer support. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.