Solely dedicated to providing immediate and lifesaving educational, emotional and financial support to families, medical professionals and other caregivers before, during and after a diagnosis of twin to twin transfusion syndrome including other forms of TTTS: TAPS (twin anemia polycythemia sequence), SIUGR (selective intrauterine growth restriction) and TRAP (twin reversed arterial perfusion).
Read moreSupporting individuals with a 4th chromosome condition and their families by providing information, education and support; uniting families, researchers, and professionals; and promoting awareness, understanding and research of 4p-syndrome, with Wolf-Hirschhorn Syndrome as the main condition.
Read moreFor families who have a child diagnosed with any type of chromosome disorder, including deletions, duplications, rings, inversions, and translocations. Phone support, information, and newsletter.
Read moreSupport, information, education, networking, and advocacy for individuals with facioscapulohumeral disease (Landouzy-Dejerine muscular dystrophy). General information on living with FSHD, support groups, advocy information, and assistance in starting chapters.
Read moreSupport, information and referrals for those with Lennox Gastaut Syndrome. Share experiences, new therapies, and safety ideas.
Read moreSupport network for families affected by Niemann-Pick Disease. Research funding, advocacy, newsletter, information and referrals, literature, phone support, and conferences.
Read moreThe main goals are patient and family support, public education, medical staff education, promotion and funding of research and ultimately the treatment and cure of Proteus Syndrome.
Read moreOpportunity for families affected by VHL to share knowledge and experience with each other and the medical community. Goal is to improve diagnosis, treatment, and quality of life. Newsletter, phone support, education, and assistance for new groups.
Read moreFor families having a child with 5P- Syndrome, a genetic disorder characterized by a high-pitched cry. Dedicated to facilitating the flow of information among affected families and medical professionals. Support groups can be located through this site, parent to parent connections as well as sibling connections are offered. Newsletters, annual meetings, and family listing available
Read moreFor families, individuals, and professionals affected by Treacher Collins syndrome or a related disorders. Networking, educational materials, newsletter, referrals, phone support, resource list, bibliography, central library, videos, and booklets.
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