Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 2 (2 total).

Cystinosis Foundation

Annotation: The Cystinosis Foundation serves as a support group for parents of children with cystinosis, educates the general public and the medical community, and raises funds for research. Publications include a pamphlet, Facts About Cystinosis, and a quarterly newsletter.

Keywords: Cystinosis, Children, Fundraising, Metabolic diseases, Parent groups, Support groups

Cystinosis Research Network (CRN)

Annotation: The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The network offers news, information about cystinosis and about research, links to additional resources, and two e-mail discussions lists, one for parents and one for adolescents, and an e-mail newsletter.

Keywords: Children, Cystinosis, Fundraising, Metabolic diseases, Parent groups, Support groups