AAIDD- American Association on Intellectual and Developmental Disabilities
Phone: (202) 387-1968 | Fax: (202) 387-2193
AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.
AAPD- American Association of People with Disabilities
Phone: (800) 840-8844 | Fax: (866) 536-4461
The purpose of the AAPD is to further the productivity, independence, full citizenship and total integration of people with disabilities into all aspects of society and the natural environment. The organization focuses on fostering leadership among people with disabilities, supporting the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, and conducting programs to enhance the lives of people with disabilities, including programs to reduce poverty and unemployment, to ensure that every disabled person has the right to his or her own living arrangement, and to assure that every child or adult with a disability has access to and funding for assistive technology.
American Society for Deaf Children (ASDC)
Phone: (800) 942-2732
Email: [email protected]
The ASDC supports children who are deaf or hard of hearing and their families through services including a lending library, resource information, parent support groups and biennial conventions.
Angelman Syndrome Foundation Inc. (ASF)
Phone: (800) 432-6435 | Fax: (630) 978-7408
Email: [email protected]
ASF’s mission is to advance the awareness and treatment of Angelman Syndrome through education, information exchange and research. The foundation can put you in touch with local contacts within your region that are also available to answer questions, and are coordinators of social gatherings and mini-conferences.
Autism Society of America
Phone: (800) 328-8476
The Autism Society of America was founded in 1965 by a small group of parents working on a volunteer basis out of their homes. Over the last 30 years, the Society has developed into the leading source of information and referral on autism.
Center For Self-Determination
Phone: (734) 722-7029 | Fax: (734) 467-7639
The purpose of The Center for Self-Determination is to change the nature of the support and service system for individuals with disabilities, using the principles of self-determination to help all persons create the lives they want, connected to and with their communities.
Cystic Fibrosis Foundation
Phone: (800) 344-4823
Email: [email protected]
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. For more information on the Oregon chapter call (800) 448-8404.
Disability Research and Dissemination Center
Email: [email protected]
DRDC is an organization that provides concrete supports to centralize access and focus on knowledge surrounding major areas of the National Institute on Disability and Rehabilitation Research studies and related activities in the disability field.
Epilepsy Foundation
Phone: (301) 459-3700 or Spanish: (866) 748-8008 | Fax: (301) 577-2684
Email: [email protected]
The Epilepsy Foundation works to ensure that people with seizures are able to participate in all life experiences. Examples of services provided include research, education and advocacy for people with epilepsy and their families and friends.
International Rett Syndrome Association (IRSA)
Phone: (513) 874-3020
Email: [email protected]
IRSA provides timely, accurate, objective information on Rett syndrome throughout the world to people who need information and resources and to researchers who can make a difference.
Muscular Dystrophy Association USA (MDA)
Phone: (800) 572-1717
Email: [email protected]
The Muscular Dystrophy Association is a voluntary health agency dedicated to conquering neuromuscular diseases that affect more than 1 million Americans. The MDA serves people with neuromuscular diseases and their families through services including clinics, research, education and funding.
National Association for the Dually Diagnosed (NADD)
Phone: (845) 331-4336
Email: [email protected]
The purpose of NADD is to advance mental wellness for persons with developmental disabilities through the promotion of excellence in mental health care. NADD provides services and support to professionals, care providers, parents, concerned citizens and organizations
National Council on Independent Living (NCIL)
Phone: (844) 778-7961 | Fax: (202) 207-0341
Email: [email protected]
The National Council on Independent Living is a membership organization that advances the independent living philosophy and advocates for the human rights of, and services for, people with disabilities to further their full integration and participation in society.
National Down Syndrome Society (NDSS)
Phone: (800) 221-4602 | Fax: (646) 870-9320
Email: [email protected]
The National Down Syndrome Society was established in 1979 to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. The NDSS serves the community through information dissemination, education, research and advocacy.
National Family Association for Deaf-Blind (NFADB)
Phone: (800) 255-0411 | Fax: (516) 883-9060
The (NFADB) is an association that promotes and supports individuals who are deaf-blind in becoming valued members of society, allowing them the same opportunities and choices as other members of the community.
Center of Parent Information and Resources
Phone: (973) 642-8100
Email: [email protected]
CPIR serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.
National Organization for Rare Disorders (NORD)
Phone: (203) 744-0100 | Fax: (203) 263-9938
NORD is a health organization dedicated to helping people with rare diseases (diseases affecting fewer than 200,000 people) and assisting the organizations that serve them. Examples of NORD’s services include education, advocacy and research.
Parent Advocacy Coalition for Educational Rights (PACER)
Phone: (800) 537-2237 | Fax: (952) 838-0199
The mission of PACER is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. Services include helping families identify the resources and services available to help their child learn and grow, programs specific to development and growth, and other educational materials for families and professionals.
Sibling Support Project
Phone: (425) 362-6421
Email: [email protected]
The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. The project is based at Children's Hospital and Regional Medical Center in Seattle, Wash.
Spina Bifida Association of America (SBAA)
Phone: (800) 621-3141
Email: [email protected]
The Mission of the Spina Bifida Association of America is to promote the prevention of Spina Bifida and to enhance the lives of all affected. SBAA provides services such as referral services, newsletters, individual and systems advocacy, and research.
TASH
Phone: (202) 817-3264 | Fax: (202) 999-4722
Email: [email protected]
TASH is an international association of people with disabilities, their family members, other advocates and professionals fighting for a society in which inclusionofallpeopleinallaspectsofsocietyisthenorm.T ASH's focus is on those people with disabilities who are most likely to be at risk for living, working, playing and/or learning in segregated environments. Examples of services provided by TASH include community advocacy, research and collaboration among families, self-advocates, professionals, policymakers and other advocates.
Williams Syndrome Association
Phone: (800) 806-1871
Email: [email protected]
The Williams Syndrome Association provides information and emotional support to individuals with characteristics of Williams syndrome, their families and the professionals who work with them. Services also include programs to help build strengths and meet challenges from early childhood through adulthood, public awareness and understanding, and research support.