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For further information and resources regarding Fragile X Syndrome, call, write, or visit the following organizations and request a copy of their newsletter or other publications.
Take part in The National Fragile X Survey The National Fragile X Survey will look at how fragile X affects families. The survey will be the first to gather national data from families that can be used to inform policy and improve practice.
National Fragile X Foundation P.O. Box 190488-0488 San Francisco, CA 94119-0488 800-688-8765; 510-763-6030 510-763-6223 (fax) E-mail: natlfx@sprintmail.com Web: http://www.fragilex.org The mission of the National Fragile X Foundation is to promote education and research of Fragile X syndrome, and disseminate information and new findings. The Foundation holds a bi-annual conference that is an opportunity to share and exchange the latest information and research for Fragile X Syndrome. Publishes a newsletter, The Foundation Quarterly. Offers a list of print and other media materials.
View Resources from the National Fragile X Foundation
FRAXA Research Foundation 45 Pleasant Street Newburyport, MA 01950 978-462-1866 978-463-9985 (fax) E-mail: kclapp@fraxa.org Web: http://www.fraxa.org/
A national nonprofit organization that funds research aimed at finding a treatment or cure for Fragile X Syndrome. Publishes a quarterly newsletter, FRAXA Update, as well as other materials. Maintains a Web site and lists about Fragile X; and organizes advocacy and fundraising events around the country.
Conquer Fragile X Foundation 189 Bradley Place, Suite 1 Palm Beach, FL 33480 561-842-9219 877-275-1192 (fax) E-mail: mail@cfxf.org Web: https://fragilex.org/
Seeks to create strong, dynamic linkages between Fragile X researchers in the U.S. and abroad. Supports Fragile X research projects and encourages creative approaches to strengthen the body of Fragile X research through cooperation and coordination of research efforts.
The National Institute of Child Health and Human Development (NICHD) P.O. Box 3006 Rockville, MD 20847 1-800-370-2943 301-984-1473 (fax) E-mail: NICHDInformationResourceCenter@mai.nih.gov Web: http://www.nichd.nih.gov
The NICHD Information Resource Center is a source for NIHD brochures, booklets, and other materials related to the health of children adults, families, and populations.
Dolan Learning Center - Your Genes Your Health
This site is a multi-media guide to genetic disorders.
Check out information about general education resources, IEP websites, and IEP books/DVDs. Go to The National Fragile X Foundation website.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh One Children’s Hospital Way 4401 Penn Ave. Pittsburgh, PA 15224
In addition to the main hospital, Children's has many convenient locations in other neighborhoods throughout the greater Pittsburgh region.
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Interested in giving to Children's Hospital? Support the hospital by making a donation online, joining our Heroes in Healing monthly donor program, or visiting our site to learn about the other ways you can give back.