The International Rett Syndrome Foundation (IRSF) was established in July 2007 with a mission to fund research for treatments and a cure for Rett syndrome. We can enhance the overall quality of life for those living with Rett syndrome. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome.… Continue Reading Information and Support [...]
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The Joubert Syndrome & Related Disorders Foundation is an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference. The Joubert Syndrome & Related Disorders Foundation plays an important role in educating doctors and their support teams as well as increasing public… Continue Reading Information and Support [...]
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Dedicated to enhancing the quality of life for all individuals with learning disabilities and their families through advocacy, education, research and service. Learning Disabilities Association of America 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Pittsburgh Cindy Cipoletti info@ldaamerica.org 412-344-0224 412-341-1515 18839… Continue Reading Information and Support [...]
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The NFED empowers and connects individuals and families affected by ectodermal dysplasias through education, support, and research. We provide regional and national resources, including educational publications and newsletters, to help families navigate their journey. Our financial assistance program helps eligible families access essential medical and dental care. Additionally, we support research efforts to advance… Continue Reading Information and Support [...]
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Focuses on issues important to military families including child care, health care, spouse employment, secure retirement, and support for widows and widowers. National Military Family Association Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Alexandria Becca Garrison info@MilitaryFamily.org 703-931-4600… Continue Reading Information and Support [...]
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Answers questions on a broad range of topics: educational rights, treatment options, diagnostic procedures, and locating support and services. Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Lanham Sarah Brown customer_service@chadd.org 800-233-4050 18954 Information and… Continue Reading Information and Support [...]
Information and Support
Dedicated to the identification, treatment, and cure of urea cycle disorders, providing information and education for families and healthcare professionals. National Urea Cycle Disorders Foundation Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Pasadena info@nucdf.org 626-578-0823 626-578-0833 800-386-8233 18962… Continue Reading Information and Support [...]
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Supports research, education, awareness, and mutual support through local network groups, chatrooms, e-newsletter, and comprehensive Information Center on website. Osteogenesis Imperfecta Foundation Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Gaithersburg Michael Stewart mstewart@oif.org 301-947-0456 301-947-0083 800-981-2663 18981 Information… Continue Reading Information and Support [...]
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Archived 8/22/24 BAS. Organization closed as of 1/24. Assists the families of children living with hepatitis, HIV/AIDS, or other chronic viral diseases by offering emotional, financial, and informational support. PKIDS also provides a moderated kids and teen listserve. Parents of Kids with Infectious Diseases Birth to 3, 3 – 4, 5 – 8, 9… Continue Reading Information and Support [...]
Information and Support
WHAT WE DO: Raising awareness and providing support. Encouraging and empowering those impacted by Anorectal Malformations and Hirschsprung Disease for over 30 years We support families from initial diagnosis of these rare disorders through adulthood. We help families with their medical journey, through ostomy care, incontinence and bowel management issues, school and social issues. Pull-thru… Continue Reading Information and Support [...]
