LINCS National Organizations and Resources

American Speech-Language-Hearing Association (ASHA)

ASHA—a professional, credentialing association for audiologists, speech-language pathologists and speech, language and hearing scientists—maintains a detailed website with a reliable consumer section, as well as information for the health professional: www.asha.org.

Autism Society

This site has educational information on the condition, lists of related organizations, research updates and advocacy issues: www.autism-society.org.

Children and Adults with Attention Deficit/Hyperactivity Disorder

This excellent site provides access to research and treatment data, information on disability issues, fact sheets, location of local chapters, a chat room and links related to ADD: www.chadd.org.

Children with Diabetes

This colorful, upbeat, activity-packed site is loaded with information for adults and children on juvenile diabetes. Includes a chat room, nutrition information, specialty camps, research and advocacy topics. Easy-to-navigate site includes a good internal search engine: www.childrenwithdiabetes.com.

Developmental Delay Resources

This nonprofit organization provides a website with information, networking opportunities and current research on children with developmental delays in sensory, motor, language, social and emotional areas. Numerous links are provided: www.devdelay.org.

National Consortium on Deaf-Blindness (NCDB)

NCDB, the national information clearinghouse on children who are deaf-blind, identifies, coordinates and disseminates information related to children and youth who are deaf-blind. NCDB is a collaborative effort of the American Association of the Deaf-Blind, Helen Keller National Center, Perkins School for the Blind and Teaching Research: www.nationaldb.org.

disABILITY Information and Resources

This extensive site, maintained by a quadriplegic man, contains links to a wide range of online resources relevant to physical disabilities, including political information, newsletters and news groups, support groups, organizations, legal resources, information on nononline resources, computer accessibility products, travel, university disability information, toll-free phone numbers and more: www.makoa.org.

Disability Rights Education and Defense Fund, Inc. (DREDF)

DREDF provides advocacy and legal assistance to adults or parents of children with disabilities. The site features legal issues and legislation, a newsletter, related website links and a hotline: www.dredf.org.

Epilepsy Foundation of America (EFA)

A national organization, EFA has extensive information available online, including fact sheets, the latest research news, medications and advocacy topics: www.epilepsyfoundation.org.

Family Resources for Our Kids With Mood Disorders

Dedicated to the early intervention and treatment of children's bipolar disorder, the foundation has information sheets and web links to medical sites, as well as related organizations. Medication information, health insurance issues for children and an online support group are also available: www.thebalancedmind.org.

International Dyslexia Association

This international, nonprofit organization has an easy-to-navigate website containing basic information on the disorder, conferences, local support groups, research and legal issues. There is a special section devoted to children and young adults: www.interdys.org.

JRDF (Type 1 Diabetes)

International in scope, JRDF's website has sections on the latest research, finding local chapters, daily care and treatment information, coping with emotional demands and health care techniques to prevent onset of complications: www.jdf.org.

KidSource Online

A parent group created an online resource for parents and caregivers that primarily emphasizes children's health and education issues. Numerous articles, resources and information on learning and physical disabilities are available. The internal search engine aids in site navigation and can also search other selected learning disability sites: www.kidsource.com.

Learning Disabilities Association of America

This nonprofit, volunteer organization's website has fact sheets, a bookstore, research bulletins and organization contacts: www.ldanatl.org.

LD OnLine

This extensive site covers learning disabilities. An internal search engine provides quick navigation. KidZone offers a special area designed for children and young adults. Some information is available in Spanish: www.ldonline.org.

March of Dimes

An organization dedicated to birth defect prevention and proper prenatal care, the site has health statistics, informative fact sheets on birth disorders, reliable links to other sites, a resource center for personal information requests, referral services and access to community-based programs on prenatal care. Some information is available in Spanish: www.modimes.org.

National Organization for Rare Disorders (NORD)

This website has excellent information on rare genetic diseases and disorders. Some information is available for free while other portions require payment. ValleyCare Health Library has access to the restricted database. Tri-Valley residents can contact the librarian about a search of NORD's extensive database: www.rarediseases.org.

National Center for Learning Disabilities

Resources and links are provided for such topics as learning disability evaluation, legislation, advocacy, innovative programs and other referral services. Current news items are featured along with a list of national organizations: www.ncld.org.

National Down Syndrome Society (NDSS)

This website features an education section, research news, referral services and advocacy issues: www.ndss.org.

National Father's Network (NFN)

NFN provides advocacy, resources and support to all men with special needs children. The web site provides links to local support and resource groups, a newsletter, personal stories by fathers and links. Some information is available in Spanish: www.fathersnetwork.org.

National Federation of the Blind (NFB)

Founded in 1940, NFB is the nation's largest and most influential organization of people who are blind. The site is extensive, with educational information for the general public on blindness, as well as specialized sections for those who are blind. Areas include information on state chapters and affiliates, advocacy issues, referral services, publications about blindness, education needs, job opportunities for those who are blind, aids, appliances and other adaptive equipment and legal issues: www.nfb.org.

National Dissemination Center for Children with Disabilities (NICHCY)

This is a national information clearinghouse for educational rights, early intervention issues and other information needs relating to children and youth with disabilities. NICHCY has full-text fact sheets available for printout. Services include personal responses to specific questions, referrals to other organizations/sources of help, information packets, NICHCY publications and technical assistance to parent and professional groups. Some Spanish content is provided: www.nichcy.org.

OASIS @ MAAP

The Online Asperger Syndrome Information and Support (OASIS) center has joined with MAAP Services for Autism and Asperger Syndrome to create a single resource for families, individuals, and medical professionals. This national nonprofit organization is committed to providing the most up-to-date and comprehensive information on Asperger's Syndrome and related conditions, including pervasive developmental disorder, high-functioning autism, nonverbal learning disability, semantic-pragmatic disorder and hyperlexia. The organization maintains a website with fact sheets, resources and educational material about Asperger syndrome and related disorders: aspergersyndrome.org.

Prader-Willi Syndrome Association

This website maintains a wealth of information on Prader-Willi Syndrome, a genetic developmental disability, including personal stories, research news, clinical trials, a newsletter, free brochures and other reading materials: www.pwsausa.org.

Spina Bifida Association

The SBA website promotes prevention strategies and provides facts on spina bifida, a newsletter, local chapter contacts, medical updates, legislative issues and useful links: www.spinabifidaassociation.org.

Tourette Syndrome Association

This informative site has current Tourette's syndrom (TS) news and events, research and treatment articles and resource materials for parents of TS children to aid in education rights, social issues, health insurance and other TS-related problems: www.tsa-usa.org.

United Cerebral Palsy (UCP)

This detailed website contains fact sheets on UCP, local UCP groups listed by state, legal information, news articles, education issues for parents, assistive technology and other advocacy needs: www.ucp.org.

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