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
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.