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Fragile X Specific

The National Fragile X Foundation unites the fragile x community to:
enrich lives through educational and emotional support; to promote public
and professional awareness; and to advance research toward improved
treatments and a cure. Their web site features information on Fragile X, testing,
treatment and worldwide support group listings.
http://www.fragilex.org

FRAXA an organization formed to support research aimed at treatment and a cure for fragile x syndrome.
http://www.fraxa.org

Fragile X Listserv Bulletin Board for Parents
http://www.fragilex.org/html/online_parent_support_groups.htm

Fragile X Listserv Bulletin Board for Parents - Spanish
Lista de Correo Electronico de Listserv para Padres - el español

http://www.onelist.com/community/xfragil

Fragile X Message Board - You will find a listing of topics covering a full range of issues pertaining to the well-being and development of individuals with fragile X syndrome.
http://www.fragilex.org/board/
http://fragilex.org/html/online_parent_support_groups.htm#

Special Education

Wrightslaw: Parents, advocates, educators, and attorneys come to Wrightslaw for accurate, up-to-date information about advocacy for children with disabilities.
http://www.wrightslaw.com

Learning Disabilities Association. IEP workshops offered throughout the year.
http://www.ldasandiego.org

San Diego County Office of Education
http://www.sdcoe.k12.ca.us

California Department of Education Special Education Division
http://www.cde.ca.gov/sp/se/

California’s Early Start Program is a federally funded program through Part C of the Individuals with Disabilities Education Act (IDEA). The program is designed to ensure that eligible infants and toddlers and their families receive evaluation and assessment of their current functioning and coordinated services early enough to make a difference in development. Go to the California Regional Center...
http://sdrc.org/c_serv_early.php

The (Federal) Office of Special Education and Rehabilitative Services (OSERS) provides a wide array of supports to parents and individuals, school districts and states in the three main areas of special education, vocational rehabilitation, and research.
http://www.ed.gov/about/offices/list/osers/index.html/

The (Federal) Office of Special Education Programs (OSEP) is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.
http://www.ed.gov/about/offices/list/osers/osep/index.html

National Early Childhood Technical Assistance Center. Their goal is to always improve results for children with disabilities and their families.
http://www.nectac.org/topics/earlyid/earlyid.asp

Recreation

San Diego Parks and Recreation Theraputic Recreation Services. The goal of the program is to provide year round recreational experiences for individuals ages 3 to adult.
http://www.sandiego.gov/park-and-recreation/activities/trs/index.shtml

Best Buddies of California, a friendship program that matches disabled students with non disabled students.
http://www.bestbuddies.org

Kids Included Together. Provides education, training, and support to ensure inclusive recreational experiences for kids with disabilities.
http://www.kitonline.org
Coast Music Therapy:  San Diego agency devoted to youth with special needs. Providing therapy in home and school settings in addition to social skills groups and adapted music lessons.
http://www.coastmusictherapy.com
 

Local Resources

The San Diego Regional Center For The Developmentally Disabled. The Regional Center serves as a focal point within the community through which a person with a developmental disability and his or her family can obtain services and/or be referred to appropriate community resources in the fields of health, welfare and education.
http://www.sdrc.org

San Diego Autism Society. Providing local support and resources
http://www.sd-autism.org/

Autism Research Institute, research center, publishes quarterly journal and information packet on latest research
http://www.autismwebsite.com

Exceptional Family Resource Center (EFRC) fosters friendships, facilitates partnerships increases awareness and promotes the perception that families of children with disabilities are healthy, functional and resourceful.
http://www.efrconline.org/

Team of Advocates for Special Kids (TASK) is a Parent Training and Information Center that Parents & Professionals can turn to for assistance in seeking and obtaining needed early intervention, educational, medical or therapeutic support service for children.
http://www.taskca.org

San Diego Network of Care
This comprehensive, Internet-based resource is for the elderly and people with disabilities, as well as their caregivers and service providers.
http://www.sandiego.networkofcare.org

State Council on Developmental Disabilities, Area Board XIII (San Diego office) is dedicated to monitoring the legal, civil, and service rights of persons with developmental disabilities and their families through assisting consumers and families through empowerment, advocacy, education, and training.
http://www.scdd.ca.gov/who_we_are/Default.htm

Office of Clients Rights Advocacy (OCRA) Your Clients' Rights Advocate: Can consult with and help people who have developmental disabilities and their families get services. Can directly represent people with developmental disabilities in administrative hearings. Can provide training about rights to consumers, their families, regional center service providers, and interested community groups. Can investigate complaints about the denial of any right to which a consumer is entitled, if the complaint involves a regional center or service provider. Can assure compliance with the law involving a denial of rights in a facility.
http://www.pai-ca.org/OCRA/Index.htm

Nationwide Resources

Now you can get information from many Government agencies, all in one convenient place.
http://www.disabilityinfo.gov

Social Security Administration
http://www.ssa.gov/disability/

The Family Village. A global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support.
http://www.familyvillage.wisc.edu

The Disability Rights Education and Defense Fund, Inc. (DREDF) is a national law and policy center dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, technical assistance, and education and training of attorneys, advocates, persons with disabilities, and parents of children with disabilities.
http://www.dredf.org

Protection and Advocacy, Inc. Advancing the human and legal rights of people with disabilities.
http://www.pai-ca.org

National Information Center for Children and Youth with Disabilities (NICHCY) is here to share information about
disabilities in children and youth
.
http://www.nichd.nih.gov/health/topics/fragile_x_syndrome.cfm


National Center of Biotechnology Information. Genes and Disease.
http://www.ncbi.nlm.nih.gov/disease/FMR1.html

MIND Institute of University of California, Davis. Our vision for the institute includes becoming a national resource for the study and treatment of neurodevelopmental disorders.
http://mindinstitute.ucdmc.ucdavis.edu/

National Institute of Child Health and Human Development (NICHD) Facts about Fragile X Syndrome.
http://www.nichd.nih.gov/publications/pubs/fragileX/index.htm

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