National Autism and Health Organizations and Parent Advocacy Groups
The Autism Science Foundation
The Autism Science Foundation's mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
Autism Society of America (ASA)
ASA seeks to improve the lives of all affected by autism by increasing public awareness about the day-to-day issues faced by people on the spectrum; advocating for appropriate services for individuals across the lifespan; and providing the latest information regarding treatment, education, research and advocacy.
Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder.
FRAXA Research Foundation
FRAXA Research Foundation is a grass roots, nonprofit organization founded by Fragile X families, for Fragile X families. They fund a number of grants and fellowships for cutting edge research dedicated to developing treatments and finding a cure for Fragile X syndrome.
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
The NCBDDD promotes the health of babies, children, and adults, and enhances the potential for full, productive living. The NCBDDD's work includes identifying the causes and prevention of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.
National Fragile X Foundation
The National Fragile X Foundation’s mission is to spread awareness of Fragile X syndrome and to provide education and help for affected families. This foundation also funds important research aimed at finding a cure for Fragile X and associated disorders. They provide many resources for researchers and families alike.
National Institutes of Health (NIH) Clinical Trials Website
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov provides information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
Organization for Autism Research (OAR)
OAR is led by parents and grandparents of children and adults on the autism spectrum, and seeks to use applied science to answer questions that parents, families, individuals with autism, teachers and caregivers confront daily.
Phelan-McDermid Syndrome Foundation (PMSF)
PMSF is a nonprofit organization whose mission is to support parents of children with 22q13 Deletion Syndrome/Phelan-McDermid Syndrome in any way possible. They also fund scientific research, host educational conferences, and aim to increase awareness of this rare genetic disorder. For more information on 22q13 Deletion Syndrome/Phelan-McDermid Syndrome, please visit www.shank3gene.org.