What is the
Cystinosis Foundation?
(From the Brochure)
The CYSTINOSIS FOUNDATION is a non-profit organization 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 - We encourage and support research for improved treatments
and a cure for Cystinosis.
- 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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