Cystinosis Research Network - CRN

Organization URL(s)

Other Contact Information

302 Whytegate Court
Lake Forest, IL 60045

866-276-3669 (Voice - Toll-free)
(847) 735-0471 (Voice)
(847) 235-2773 (FAX)

Description

The Cystinosis Research Network (CRN) is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communities about cystinosis. CRN offers three different listservs for communicating with the cystinosis community. The Cystinosis Support Group is a group for parents, affected adults, and their caregivers, family, and friends. It also welcomes researchers and medical professionals who are interested in cystinosis. This listserv provides a place to discuss the various aspects of cystinosis, including how it affects lives and how to cope with it. The Cystinosis Teen Support list is for teens with cystinosis and teenage siblings of children and adults with cystinosis. This listserv facilitates connection with other teenagers who are dealing with similar issues and the exchange of questions, concerns, ideas, and supportive sharing. Cystinosis News is a post only list that features announcements of upcoming events, important activities, and breakthroughs. The vision of CRN is the discovery of improved treatments and ultimately a cure for cystinosis.

Online Resources

About Cystinosis
http://www.cystinosis.org/aboutcystinosis.html
Cystinosis Resources - Cystinosis Research Network
http://www.cystinosis.org/resources.html

Print Resources

The Cystinosis Research Network presents information and resources of interest to Cystinosis patients, families, and friends.