Fragile X site – Centers for Disease Control (CDC) — Comprehensive site with multimedia for all audiences. Also en espagnol
Dr. Mike’s psychiatry blog — Research & treatment notes by FRAXA co-founder, medical director, and FX parent, Dr. Mike Tranfaglia
Your Genes Your Health – About Fragile X
Multimedia site includes interviews with parents, a sister, and researchers. Flash videos to illustrate genetic concepts.
For Fragile X Families
Join our Listserv
This support and information exchange group is for everyone: parents, siblings, grandparents, other family members, educators, scientists, and friends. We are grateful to Emory University for sponsoring this listserv. FRAXA started the listserv in 1995 to serve the entire fragile X community.
How to join the Listserv
To Join – email LISTSERV@LISTSERV.CC.EMORY.EDU with the following command in the body of your e-mail:
How To Leave (unsubscribe) – email LISTSERV@LISTSERV.CC.EMORY.EDU with the following command in the body of your e-mail:
If you have any questions or need help accessing the listserv, please contact Sally Nantais, FRAXA Listserv Coordinator,
Fragile X Clinics and Medical Centers — Search this map for U.S. clinics which serve people with Fragile X Syndrome.
Fragile X – A to Z; A Guide for Families by Families
100+ page guide to help families cope with daily challenges of living with a child or adult who has Fragile X. These anecdotes were provided by parents, grandparents, friends, and professionals who participate in the FRAXA Listserv.
Marcia Braden’s website — Articles and resource pages on education for families
“Me and the X-Man” — by Paul Solotaroff, published in Men’s Journal, National Magazine Award best essay finalist
Fragile X-associated Disorders (FXD) Handbook — by the National Fragile X Foundation
Key Fragile X Media Coverage
New York Times — April 2010 by Gardiner Harris
Bloomberg News — September 2009 by Dermot Doherty
Good Housekeeping — July 2011 by Michael Callahan
More FRAXA Materials
American College of Medical Genetics Recommendations
Recommendations of the American College of Medical Genetics (ACMG) to assist health care professionals in making decisions regarding genetic diagnosis and testing. October 2005.
National Center for Biotechnology Information
allows you to search public databases including OMIM, GenBank, and PubMed for up-to-date scientific information and publications on fragile X.