National Down Syndrome Congress
Support, information, and advocacy for families affected by Down syndrome. Promotes research, public awareness, newsletter, annual convention, phone support, and chapter development guidelines.
Read moreHealth/Physical Illness: Genetic Disorders/Syndromes
Nevus Network
Network of support and information for people with large congenital nevi or other rare nevus syndromes.
Read moreStickler Involved People
Offers support and education for persons affected by Stickler Syndrome. This genetic disorder affects connective tissues, including the joints, eyes, palate, heart, and hearing. Phone support, information, referrals, literature, pen pals, and newsletter.
Read moreBirth Defect Research for Children, Inc.
Birth Defect Research for Children, Inc. (BDRC) provides parents and expectant parents with information about birth defects and support services for their children. BDRC has a parent-matching program that links families who have children with similar birth defects.
Read moreDown Syndrome Innovations
The Down Syndrome Guild of Greater Kansas City is a non-profit 501(c)(3) organization whose mission is to provide support and resources for individuals with Down syndrome, their families and the professionals who serve them. DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with
Read moreHuman Growth Foundation
Local chapters offer members the opportunity to meet other parents of children with growth-related disorders for mutual sharing of problems, research, and public education. Monthly and quarterly newsletter and chapter development guidelines.
Read moreNational Eosinophilia-Myalgia Syndrome Network (NEMSN)
Support group for Eosinophilia Myalgia Syndrome patients (both 1989 EMS epidemic cases caused by L-tryptophan supplements, and also new cases from current L-tryptophan or 5-HTP.) Information and support through online contacts, phone contacts, and newsletter.
Read moreNKH-International Family Network (Non-Ketotic Hyperglycinemia)
Support for families with children with NKH, an inborn error of amino acid metabolism, often resulting in mental retardation and other neurologic abnormalities. Look on website for message board.
Read moreSturge-Weber Foundation
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 moreCFC International – Cardio-Facio-Cutaneous Syndrome Support
To improve the quality of life for individuals with CFC Syndrome and their families through family support, research, and education.
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