About Us

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The Cystinosis Research Network is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. We are a private, nonprofit 501(c)(3) corporation, Federal Tax ID 04-3323789.

CRN began with a vision in 1996. The vision of one family, which gradually grew to include hundreds more. As our network of families grew, we began to see the need to do more. Concerned for the future of those living with this disease, we realized that if we didn’t step up to the plate and set that agenda, no one else was going to. With the guidance and advice of our medical and scientific community the Cystinosis Research Network was launched. In the past two decades CRN has grown from a “kitchen table” rare disease group of parents to an internationally recognized rare disease advocacy organization which has funded millions of dollars in research, provided family support including sponsorship of 8 biennial family conferences around the U.S., and educated the public and professional communities about cystinosis via access to standards of care, brochures and sponsorship and exhibition in professional conferences around the world.

The CRN’s vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with cystinosis. Our commitment to our community lies in our tireless efforts to provide family assistance through facilitating several support groups as well as hosting a family conference every other year. At this conference we bring families and the medical community together in hopes to accelerate the accomplishment of our stated goals and objectives.

For more information, see our brochure and meet our committee of dedicated volunteers.

Dear Cystinosis, You may have made me who I am today…but I won’t let you hold me back.
-Samantha, living with cystinosis