About Us

Beginning in 2013, Dr. Randi Hagerman, medical director of the UC Davis California MIND Institute and world-acclaimed Fragile X clinician and researcher, along with Jörg Richstein, parent and head of the German Fragile X organization (Interessengemeinschaft Fragiles-X e.V.), and Robert Miller, human services consultant and former executive director of the National Fragile X Foundation in the United States, met to discuss how to bring together Fragile X parent organizations throughout the world as well as to how to launch such organizations in countries where none exist. The International Fragile X Alliance, this website, and the following document are the initial result of that meeting.

Creation of an International Fragile X Alliance
Creating a world where no one is alone with the diagnosis of Fragile X
A white paper collection of proposals for consideration by Fragile X parent groups throughout the world by

Jörg Richstein, PhD
Robert Miller
Randi Hagerman, MD

In 2014, Jörg and Robert presented the international alliance proposal at the meeting of the European Fragile X Network in Berlin, Germany where it was enthusiastically accepted by the 13 countries in attendance. In 2015, all national Fragile X parent support groups from around the world were invited to join the alliance.