Welcome to the FG Syndrome Family Alliance

An organization for individuals and families affected by FG Syndrome

FG Syndrome is an X-linked genetic syndrome, believed to affect both boys and girls; which causes a variety of physical anomolies, developmental delays, and special health needs.

The FGSFA, Inc. is a non-profit corporation recognized under section 501c3 of the Internal Revenue code. This organization serves individuals interested in FG Syndrome in the United States and around the world. We publish a bi-monthly print newsletter, host several listservs, produce informational materials for families, educators and medical professionals, and sponsor a triennial international family and scientific conference. Our most recent conference was held in July 2005 in Boston, Massachusetts. If you are interested in being involved with the FG Syndrome Family Alliance, please contact us.

If you are interested in receiving an Introductory Packet of information on FG Syndrome and the Alliance, please send an email request

NOTICE: We regret to announce that the 2008 Portland Conference is cancelled

Dear Friends, It is with great sadness that I write to inform you that the FG Syndrome Family Conference for 2008 has been cancelled due to lack of enrollment. Although we had developed an incredible program, and a great lineup of speakers and breakout sessions, we simply could not generate enough interest to be able to meet the expenses of the conference. We have reached the deadline at which we can cancel our event without paying a hefty financial penalty to the hotel that would host us.

If you have already registered for the conference and sent payment, your conference registration fees will be reimbursed in full over the course of the next 14 days. If you paid by Paypal, you will still be reimbursed by check because of the transaction fees charged by Paypal for each deposit and withdrawal. Reimbursements checks will be cut in the name of the person or organization making payment for the conference registration.

We have been fortunate to have two remarkable conferences in past years. There are many reasons why families could not make the journey to Oregon in 2008, and I certainly hope that the Alliance will be able to offer some sort of conference or family reunion activity in the coming years.

If you have any questions about the processing of your reimbursement, or about the cancellation in general, please feel free to contact us at info@fg-syndrome.org.

Again, I offer this announcement with deep regret and look forward to our next opportunity to gather together.

Sincerely, Sara Gelser, Conference Committee Chair
FG Syndrome Family Alliance, Inc.