The Reeve Foundation’s Living with Paralysis and Caring for a Family Member Living with Paralysis support groups provide an opportunity for members to connect with others who understand what they are going through and to gain support, insight and guidance. Separate groups are held for individuals living with quadriplegia, those living with paraplegia, and family
Read moreWe are a non profit organization whose mission is to provide information and support to families with children who have 9p- Syndrome.
Read moreThe Fabry Support & Information Group is a non-profit, 501(c)3 organization established in 1996. FSIG distributes information about Fabry disease to increase understanding and awareness, offers emotional support through networking services, publishes newsletters, provides advocacy with the patient, medical and pharmaceutical communities plus additional support programs. It is the mission of the Fabry Support &
Read moreDedicated to increasing public awareness of Klinefelter syndrome and providing support and information to those dealing with the syndrome. Brochure and newsletter.
Read moreInformation on Marfan syndrome for patients, families, and physicians. Sharing and support for patients and relatives. Supports and fosters research. Conference, newsletter, publications, and group development guidelines.
Read moreSupport network for patients and families affected by progressive osseous heteroplasia. Fundraising for research.
Read moreSolely 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.
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