Network for families affected by Sturge-Weber Syndrome, Port Wine Stain, or Klippel-Trenauney-Weber syndrome. Information, funds for research, quarterly newsletter, phone support, letter writing among families, and group development guidelines.
Read moreTo improve the quality of life for individuals with CFC Syndrome and their families through family support, research, and education.
Read moreFree packets to new parents with information on education, support groups, medical research, newsletter, phone support, and conferences. Sponsored by the National Down Syndrome Society.
Read moreBrings Huntington’s disease families together for mutual support and information exchange.
Read moreDistributes information on symptoms and treatments, support programs for families, newsletter, family and regional conferences, member directory, dental implant program, and scholarships.
Read moreSupport, information, and networking for families affected by organic academia or related disorders. Pen pal program, telephone network, and newsletter.
Read moreSupport organization for Trisomy 18, Trisomy 13, and related disorders (SOFT)
SOFT values education to empower families and professionals through the Trisomy journey.
SOFT values and celebrates hope through sharing our stories to celebrate the legacy and value each child brings to their Trisomy journey.
SOFT values research, discovery and current knowledge of
Read moreResource and For patients and families affected by Charcot-Marie-Tooth disorders (also known as peroneal muscular atrophy or hereditary motor sensory neuropathy). Referrals, newsletter, phone help, video tapes, support groups, and conferences. Please call for group times as they vary.
Read moreThe mission of the Down Syndrome Society of Wichita is to enhance the lives of individuals with Down syndrome and their families by providing them with support and resources and by raising public awareness about Down syndrome.
Read moreInformation, Education, Research, Resources, and Advocacy for those with different types of ectodermal dysplasias and their families. Connection to other families like yours.
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