This nonprofit organization links families to resources and hosts an annual event for Monosomy 9P, otherwise known as Alfi’s Syndrome or 9P-, a rare chromosome anomaly. Chromosome 9p Minus Network Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Baton… Continue Reading Information and Support [...]
Archives: Posts
Information and Support
Offers informational activities and works to increase awareness of the congenital birth defect Dandy-Walker. One in 10,000 children is born with Dandy-Walker Malformation, a congenital brain malformation involving the cerebellum and the fluid-filled spaces around it. Dandy-Walker is often associated with other conditions such as hydrocephalus, seizures, mobility issues, developmental delays, other central nervous… Continue Reading Information and Support [...]
Information and Support
Offers information and medical research. We have a national family conference, on ichthyosis and related disorders. Also offers financial assistance. Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) Birth to 3, 3 – 4, 5 – 8, 9 – 13, 14 – 18, 19 – 22, 23 – 59, 60 + Lansdale Lisa… Continue Reading Information and Support [...]
Information and Support
FACES assists families with travel to major medical centers. Specialized craniofacial teams provide the safest and most advanced treatment for building a face and skull. FACES, along with Face Equality International, of which FACES is a founding member, provides information and education to increase public understanding of craniofacial differences. FACES provides free and unbiased… Continue Reading Information and Support [...]
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, 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 [...]
