Next Generation of Cystinosis

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. Next Generation of Cystinosis is a volunteer-run nonprofit founded in 2019 that supports adults (18+) affected by cystinosis. Its mission is to foster open, honest dialogue about their needs and challenges, while providing emotional and psychological support, medically accurate sexual and reproductive health education, and guidance to reliable resources and information. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.