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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 and 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 by CRN.
Write:
Cystinosis Research Network
302 Whytegate Court
Lake Forest, IL 60045
Voice: 1-866-276-3669
Fax: 847-235-2773
Website: http://www.cystinosis.org
E-mail: CRN@cystinosis.org
Verified: 10/1/2008
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.
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