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(member of The MHE Coalition) National. Founded 1999. Provides peers and a supportive community to children suffering from multiple hereditary exostoses (a genetic disorder in which benign cartilage-capped bone tumors grow from growth plates of long bones or on the surface of flat bones). Develops information and literature to assist children and their families in dealing with the disease. Offers free Bumpy Bone Club membership to patients and their siblings. Provides We Care packages to children having surgery and their siblings. Advocacy, information and referrals, phone and e-mail support.
MHE and Me
c/o Susan Wynn
P.O. Box 651
Pine Island, NY 10969
National. 3 affiliated groups. Founded 2000. Support and information for persons and their families affected by multiple hereditary exostoses, a skeletal disorder characterized by the formation of abnormal bony growths. Promotes and encourages research to find the cause, treatment and cure. Newsletter, networking, literature, advocacy, online chat, information and referrals, phone support and pen pals.
6783 York Road, #104
Parma Heights, OH 44130-4596
Voice: 440-842-8817 or 440-821-5038 / Chele Zelina
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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