Cystinosis Foundation


The Cystinosis Foundation is a non-profit organization with more than 30 years of International experience in supporting and educating families and the medical community through the dissemination of educational literature, funding research, and annual conferences.

We are dedicated to providing services for those suffering from cystinosis by:

Parental Support – Parents are given information and referrals, receive Newsletters and are invited to Foundation sponsored Conferences.

Education – The medical profession and the general public are educated about this rare disease through receptions at medical meetings, the media and distribution of literature.

Research Support – The Foundation raises funds to promote research on causes and treatments of cystinosis.

Affiliations – The Foundation is a member of the National Organization of Rare Disorders (NORD), EURODIS, and Genetic Alliance, organizations that further the cause of those coping with rare disease.

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