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Cystinosis Research Network

Cystinosis

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Cystinosis Research Network

Online. Founded 1996. Dedicated to supporting and advocating for continued research, providing family support and education programs. Professionals and caregivers are welcome to join. Promotes and supports research that will lead to a better understanding, improved treatments and a cure for cystinosis. Dedicated to improving awareness and education of cystinosis to be utilized as a resource for families and public. Programs include support group, networking, toll-free number, website, newsletter and family conferences. Website to improve awareness and education of cystinosis for patients, families and physicians. Non-moderated but members must be pre-approved.

Website: http://www.cystinosis.org

Verified: 9/20/2011

The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.

For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org

Copyright © 2011 American Self-Help Group Clearinghouse. All rights reserved.

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