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National & Regional Learning and Developmental Disabilities Organizations
(a partial compilation current as of July 2005)
- American Association on Mental Retardation
- Asperger Syndrome Education Network (ASPEN)
- Association of Birth Defect Children (ABDC)
- Attention Deficit Information Network, Inc. (AD-IN)
- Autism Research Institute (ARI)
- Autism Society of America
- Canadian Institute of Child Health
- CAN, The Cure Autism Now Foundation
- Center for the Study of Autism
- Children's Defense Fund
- DAN, Defeat Autism Now
- Developmental Delay Resources
- Dyslexia Research Institute
- Family Voices National Office
- Federation for Children with Special Needs
- International Dyslexia Association (IDA)
- International Rett Syndrome Association
- LD Online
- Learning Disabilities Association of America (LDA)
- Learning Disabilities Association of Canada (LDAC)
- March of Dimes Birth Defects Foundation
- National Alliance for Autism Research
- National Association for the Dually Diagnosed (NADD)
- National Attention Deficit Disorder Association (ADDA)
- National Down Syndrome Society
AAMR is the oldest and largest interdisciplinary organization of professionals (and others) concerned about mental retardation and related disabilities. The organization promotes global development and dissemination of progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.
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ASPENŽ is a regionally-based non-profit organization headquartered in New Jersey, with 13 local chapters, providing families and those individuals affected with Asperger Syndrome, PDD-NOS, High Functioning Autism, and related disorders.
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ABDC was founded in 1982 to serve as a national clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities. It sponsors the National Birth Defect Registry and a parent matching service and also studies the links between drugs, radiation, alcohol, chemicals, lead, mercury, dioxin and birth defects.
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A non profit volunteer organization offering support and information to families of children with ADD, adults with ADD, and professionals through a network of AD-IN chapters. AD-IN was founded in 1988 by several parent support group leaders on the premise of parents helping parents deal with their children with ADD. The network has parent and adult support group chapters throughout the US.
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ARI is devoted to conducting and disseminating the results of research on the causes of autism and on methods of preventing, diagnosing, and treating autism and other severe behavioral childhood disorders. The ARI data bank, the world's largest, contains detailed case histories.
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An organization whose mission is to promote lifelong access and opportunities for persons with autism spectrum and their families; to be fully included, participating members of their communities through advocacy, public awareness, education, and research.
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For 25 years, this organization has acted as a dedicated voice for children, improving their health and well-being. "We work to ensure that this goal is met through our many publications and resources for parents and health professionals... Our role in child and family health involves working with governments to make sure the right kind of policies are developed; working with professionals and educators to equip them with the best in research and programs; and reaching out to families to help with the crucial task of nurturing, protecting, educating, and empowering our children. We are determined to give all of our children the best possible future by making them a top priority."
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A non-profit organization of parents, physicians, and researchers dedicated to promoting and funding research with direct clinical implications for the treatment and cure for autism. On their web site are updates about current national autism research, CAN's own funded research, and information about CAN's Autism Genetic Resource Exchange - the world's first collaborative autism gene bank established for autism research.
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An organization that provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions. Much of their research is in collaboration with the Autism Research Institute in San Diego, California.
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An organization whose mission is to Leave No Child BehindŽ and to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start, and a Moral Start in life and successful passage to adulthood with the help of caring families and communities. Particular attention is given to the needs of poor, minority, and disabled children. The Fund encourages preventive investment before children get sick or into trouble, drop out of school, or suffer family breakdown.
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The Autism Research Institute (ARI) convened a group of physicians and scientists in 1995 to share information and ideas for defeating autism as quickly as possible. One major goal was to produce a physicians' guide for clinical assessment of autistic patients, leading to appropriate treatment. The participants continue to work together to find effective treatments.
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A nonprofit organization dedicated to meeting the needs of those working with children who have developmental delays in sensory, motor, language, social, and emotional areas. DDR publicizes research into determining identifiable factors that would put a child at risk and maintains a registry, tracking possible trends. DDR also provides a network for parents and professionals and current information after the diagnosis to support children with special needs.
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Since 1975, the goal of DRI has been to change the perception of learning differences, specifically in area of dyslexia and attention deficit disorders.
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A national, grass roots clearinghouse for information and education concerning the health care of children with special health needs. There is a Volunteer Coordinator in every state and 10 Regional Coordinators. Family Voices is a component of the Federation for Children with Special Needs in Boston.
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The Federation provides a center for parents and parent organizations to work together on behalf of children with special needs and their families. It operates a Parent Center in MA which offers a variety of services to parents, parent groups, and others who are concerned with special needs children.
| Address |
1135 Tremont Street
Suite 420
Boston, MA 02120 |
| Telephone |
(617) 236-7210 or (800) 331 0688 (in MA) |
| Fax |
(617) 572-2094 |
| E-Mail |
fcsninfo@fcsn.org |
| Home Page |
http://www.fcsn.org/home.htm |
| Events Page |
visit home page |
| Publications |
yes |
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An international non-profit organization that offers training in language programs and provides publications on dyslexia. There are chapters in most states.
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This organization's mission is to support and encourage medical research to determine the cause of and find the cure for Rett syndrome, to increase public awareness of Rett syndrome, and to provide informational and emotional support to families of children with Rett syndrome.
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LDOnline is an interactive guide to learning disabilities for parents, teachers, and children, providing LD information and resources. It is a service of The Learning Project at WETA, Washington, D.C., in association with The Coordinated Campaign for Learning Disabilities.
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A national non-profit organization, with state and local chapters, that offers information and various publications for LD children and adults and has an annual conference.
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A non-profit organization with provincial and territorial offices that conducts programs and provides information (books, pamphlets) for LD children and adults.
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An organization that provides accurate, timely information and referral services to the public relating to topics such as specific birth defects or infant health problems, pregnancy, newborn care, drugs and environmental hazards during pregnancy (teratogens), support groups, and genetics.
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A national non-profit organization dedicated to finding the causes, prevention, effective treatment, and cure of autism spectrum disorders.
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A non-profit association designed for professional and family interests on behalf of individuals who have developmental disabilities and mental health needs. NADD provides educational services, training materials, and conferences. It is influential in the development of appropriate community based policies, programs, and opportunities in addressing mental health needs of persons with mental retardation.
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An organization built around the needs of adults and young adults with ADD and ADHD. ADDA also serves those who love, live with, teach, counsel, and treat such individuals.
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This organization was established in 1979 to increase public awareness about Down Syndrome, to assist families in addressing the needs of children born with this genetic condition, and to sponsor and encourage scientific research. It sponsors internationally renowned scientific symposia, provides information and referral services through a toll-free number, and develops educational materials, many of which are freely distributed.
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