SSSA 2010
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Other Support Groups and ContactsOnline CommunityThe Sotos Syndrome Email Community can be found at eGroups: Sotosyndrome. Now you can ask your questions relating to Sotos Syndrome to a community who understands what you are dealing with. Likewise, you can post your triumphs and joys with a community who will smile and appreciate your stories. Here's how it works... You subscribe to the Sotos Syndrome Email Community, set up your user profile, and specify your email address. That's it! You're now a member of the 'email community' ... and it's all FREE!!! Now you can send a message to the community mailbox and all other subscribers will automatically receive your posting. Oh, and I've set up a directory where we can post our pictures of kids with Sotos Syndrome. What a great way to watch our kids as they grow up. It might also serve parents who just found out about Sotos Syndrome as a way to see what the future holds. Lots of possibilities! Subscribe today! We need your active participation for this to make a difference. Click HERE to subscribe. Sotos Syndrome Support Association of CanadaSSSAC/ACESS was incorporated January 2002 to provide educational and emotional support to Canadian families of persons with Sotos syndrome and to provide a better understanding to parents, government and the public at large of Sotos syndrome (Cerebral Gigantism) through education. You can also contact the SSSAC by email. The Eltern-Initiative Sotos-Syndrom [EISS]A new homepage (auf Deutsch) dedicated to Sotos Syndrome and family support from Germany. There are some great pictures inside -- check it out!!! You can also contact the EISS by email. A Support Group for Sotos Syndrome in AustraliaIf you're from the land down under or just want to share with others who know about Sotos Syndrome, drop a line to Robert and Debbie Hope. Sotos Syndrome Support Association of Finland.Provide educational and emotional support to families of persons with Sotos syndrome in Finland The UK Child Growth FoundationThe UK's leading charity trying to ensure that every child's growth is regularly assessed and cares throughout life for the children who do not grow enough or grow too much. CFG is the umbrella organisation for : GROWTH HORMONE INSUFFICIENCY, TURNER SYNDROME, IUGR/RUSSELL SILVER, BONE DYSPLASIA, SOTOS AND PREMATURE SEXUAL MATURATION patient/ parent support groups.
THE CHILD GROWTH FOUNDATION The National Organization for Rare DisordersThe National Organization for Rare Disorders The ArcGenetics Home ReferenceThe Danish Association for Sotos Syndromehttp://www.sotossyndrom.dk/Forside.aspx Sotos Association - L'Eveilget in touch with the newest support group from France... Sotos Association - L'Eveil Networking with Educators and ProfessionalsGenetics Education Center - UKMCUniversity of Kansas Medical Center - Other genetic education programs, professionals working with teachers. Networking with Other Non-Profit OrganizationsNewsgroup: soc.org.nonprofit
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