Dedicated to supporting ongoing medical research for myotubular myopathy and other related congenital myopathies and families lacking the resources for medical equipment. Joshua Frase Foundation Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22 Ponte Verde Beach Alison Rockett Frase info@joshuafrase.org 904-273-9818 904-607-1358 18826 Information… Continue Reading Information and Resources [...]
Archives: Posts
Information and Resources
Dedicated to the support of research for the study of early onset bipolar disorder. Offers information and resources for families. Diagnostic Criteria 1) Episodic and Abrupt Transitions in Mood States 2) Fear of Harm 3) Thermoregulatory Disturbance 4) Aggression 5) Sleep/Wake Disturbances 6) Symptoms Are Not Due to a General Medical Condition 7) A… Continue Reading Information and Resources [...]
Information and Support
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 [...]
Information and Support
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 [...]
Information and Support
Dedicated to enhancing the quality of life for all children and adults with learning disabilities and their families through advocacy, education, research and service. Learning Disabilities Association of America (LDA) 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Pittsburgh Cindy Cipoletti info@ldaamerica.org… Continue Reading Information and Support [...]
Information and Support
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 [...]
Information and Support
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 [...]
Information and Support
Answers questions on a broad range of topics: educational rights treatment options diagnostic procedures 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 Support… 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 [...]
Information and Support
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 [...]
