International network. Founded 1995. Provides sharing of support, information and coping skills for families affected by xeroderma pigmentosum. Quarterly informational newsletter. Promotes research into finding a cure. Information and referrals, phone support, conferences, literature, advocacy in community, education and protection. Free window tinting on homes of patients. Camp Sundown for patients of all ages and their families.
Write:
Xeroderma Pigmentosum Society
437 Snydertown Rd.
Craryville, NY 12521
Voice: 518-851-2612
Website: http://www.xps.org
E-mail: carn@xps.org
Verified: 10/27/2009
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
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