This list identifies local and national organizations that provide resources and support for individuals with intellectual disabilities. The list also includes resources for families who have a child with a Down syndrome diagnosis, a Fetal Alcohol Spectrum Disorder diagnosis or a Fragile X syndrome diagnosis as these are three of the most common diagnoses associated with an intellectual disability.
The following organizations address intellectual disabilities at the general level:
American Association on Intellectual and Developmental Disabilities (AAIDD)
Nonprofit organization dedicated to improving resources for professionals working with individuals with intellectual and developmental disabilities and promoting inclusion. AAIDD produces journals and publications and also offers professional training.
Nonprofit organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities.
Nonprofit organization dedicated to promoting and protecting the human rights of people with intellectual and developmental disabilities and actively supporting their full inclusion and participation in the community throughout their lifetimes.
According to the National Institute of Mental Health (NIH), "Down syndrome is a set of cognitive and physical symptoms that result from having an extra chromosome 21 or an extra piece of that chromosome. It is the most common chromosomal cause of mild to moderate intellectual disabilities." The following organizations support individuals diagnosed with Down syndrome:
Down Syndrome-Autism Connection
Nonprofit dedicated to providing education and support to individuals facing the unique challenges caused by co-occurring Down syndrome and autism.
Down Syndrome International (DSi)
UK-based international charity, whose membership is comprised of individuals and organizations from all over the world, committed to improving quality of life for people with Down syndrome worldwide.
+44 (0)1395 493108 ds-int.org
GiGi’s Playhouse Achievement Center
GiGi's Playhouses are a network of Down syndrome achievement centers that provide free therapeutic, educational and career training programs, resources and support to individuals with Down syndrome. View in Provider Directory
Global Down Syndrome Foundation
Nonprofit dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.
International Down Syndrome Community (IDSC)
IDSC is a volunteer-run organization that provides information to new parents, creates awareness about Down syndrome, connects Down syndrome organizations and their members and shares stories of sucess and inspiration. theidsc.org
International Mosaic Down Syndrome Association (IMDSA)
Nonprofit with the mission of supporting any family or individual whose life has been touched by mosaic Down syndrome by continuously pursuing research opportunities and increasing awareness in the medical, educational and public communities throughout the world.
National Association for Down Syndrome (NADS)
NADS supports all persons with Down syndrome in achieving their full potential by providing resources to families, educating the public, addressing social policy issues and encouraging participation of self-advocates.
National Down Syndrome Congress (NDSC)
National nonprofit dedicated to providing support resources for families and individuals with Down syndrome.
1-800-232-NDSC (6372) ndsccenter.org
National Down Syndrome Society (NDSS)
National nonprofit dedicated to providing the opportunity for individuals with Down syndrome to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.
The Upside of Downs of Northeast Ohio (USOD)
Local nonprofit organization whose mission is to provide support, education and advocacy for individuals with Down syndrome, their families and communities. View in Provider Directory
According to the National Institute of Mental Health (NIH), "Fetal Alcohol Spectrum Disorders (FASD)" is now used to characterize the full range of prenatal alcohol damage varying from mild to severe and encompassing a broad array of physical defects and cognitive, behavioral, and emotional deficits." The following organizations support individuals diagnosed with FASD:
Collaborative Initiative on Fetal Alcohol Spectrum Disorders (CIFASD)
Consortium with the purpose of informing and developing effective interventions and treatment approaches for Fetal Alcohol Spectrum Disorders (FASD), through multidisciplinary research involving basic, behavioral and clinical investigators and projects.
Families Affected by Fetal Alcohol Spectrum Disorders (FAFASD)
Nonprofit that seeks to spread information, awareness, and hope for caregivers of people with FASD.
National Organization on Fetal Alcohol Syndrome (NOFAS)
NOFAS works to prevent prenatal exposure to alcohol, drugs, and other substances known to harm fetal development by raising awareness and supporting women before and during their pregnancy, and supports individuals, families, and communities living with Fetal Alcohol Spectrum Disorders (FASDs) and other preventable intellectual/developmental disabilities.
Double ARC Center for FASD
Founded by the Sisters of Notre Dame, Double ARC is the Ohio affiliate of NOFAS.
According to the National Institute of Mental Health (NIH), "Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairments." The following organizations support individuals diagnosed with Fragile X syndrome:
FRAXA Research Foundation
National nonprofit, committed to finding effective treatments and eventually a cure for Fragile X syndrome.
Fragile X Alliance of Ohio
The Fragile X Alliance of Ohio is the local chapter of FRAXA. This organization provides family support, promotes education of physicians, therapists, educators and the general public and supports research on Fragile X syndrome. fragilexohio.org
National Fragile X Foundation
Nonprofit with the mission of increasing awareness, improving public policy, supporting legislative advocacy, and increasing funding for research for Fragile X syndrome.