THE NATIONAL FRAGILE X FOUNDATION P.O. Box 190488 San Francisco, CA 94119-0488 Robert Miller, Executive Director e-mail: natlfx@FragileX.org Toll Free: 800-688-8765 Fax: 925-938-9315 Internet Home Page: http://www.fragilex.org Provides information and resource centers about Fragile X, organizes International Conference, large library of literature and videos about Fragile X
FRAXA RESEARCH FOUNDATION 45 Pleasant Street Newburyport, MA 01950 Katherine Clapp, President Phone: 978-462-1866 Fax: 978-463-9985 e-mail: info@fraxa.org Internet Home Page: http://www.fraxa.org Parent run organization that funds research on Fragile X Syndrome. Their Internet site offers links to other information, including the Listserv on Fragile X
FRAGILE X TREATMENT & RESEARCH CLINIC The Children's Hospital 1056 East 19th Avenue Denver, CO 80218 303-837-2598
DEVELOPMENTAL FX 90 Madison St., Suite 202 Denver, CO 80206 303-333-8360 www.developmentalfx.org
CHILD DEVELOPMENT UNIT Duke University Medical Center Box 3364 Durham, NC 27710 Gail Spiridigliozzi, PhD Tel: 919-684-5513
THE ARC http://TheArc.org/welcome.html A voluntary organization committed to the welfare of all children and adults with mental retardation and their families.
CLOSING THE GAP http://www.closingthegap.com Closing the Gap, Inc. is an organization that focuses on computer technology for people with special needs through it's bimonthly newspaper, annual international conference and extensive website. Search the annual resource directory online.
Helpful National Internet Sites:
U.S. HOUSE OF REPRESENTATIVES http://www.house.gov 1997 IDEA Amedments - full text of the bill amending the Individuals with Disabilities Education Act: http://www.ed.gov/offices/OSERS/IDEA/index.html
OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES http://www.ed.gov/offices/OSERS
OFFICE OF SPECIAL EDUCATION PROGRAMS http://www.ed.gov/offices/OSERS/OSEP/index.html
THE SPECIAL ED ADVOCATE http://www.wrightslaw.com A free online newsletter about special education legal issues, cases tactics and strategy, effective educational methods, and Internet links.
DEPARTMENT OF HEALTH AND HUMAN SERVICES http://www.os.dhhs.gov
CHILDREN'S HEALTH INSURANCE PROGRAM State-specific information on eligibility and enrollment. http://www.insurekidsnow.gov
Other Internet sites to visit:
http://www.altavista.digital.com A search service that references over 1000 entries on Fragile X. If you have a lot of time and curiosity, try this!
FRAGILEX-L@LISTSERV.CC.EMORY.EDU (see FRAXA's home page for information, or subscribe by sending e-mail to the preceding address and in text of message simply type SUBSCRIBE FRAGILEX-L Your Name) FANTASTIC site where parents from all over the world can talk about different issues on Fragile X! Like an on-line support group.
VIRTUAL ASSISTIVE TECHNOLOGY CENTER http://www.at-center.com Specializes in freeware/shareware software for people with disabilities.
ALLIANCE FOR TECHNOLOGY ACCESS http://www.ataccess.org The ATA is a network of community-based resource centers, developers and vendors dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies.
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