What is the Cystinosis Foundation?

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(From the Brochure)

The CYSTINOSIS FOUNDATION is a non-profit organization dedicated to providing services for those suffering from cystinosis by:

  1. Parental Support - Parents are given information and referrals, receive newsletters and are invited to Foundation sponsored conferences.

  2. 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.

  3. Research Support - We encourage and support research for improved treatments and a cure for Cystinosis.

  4. Affiliations - The Foundation is a member of the National Organization of Rare Disorders (NORD), which furthers the cause of those with rare diseases and the Alliance of Genetic Support Groups.

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