European FRAGILE X Network (EFXN)

The aim of the European Fragile X Network is to provide support and information to families affected by Fragile X Syndrome and Fragile X Premutation Associated Conditions (FXPAC) : 
Fragile X  Tremor/Ataxia Syndrome (FXTAS),

Fragile X Primary Ovarian Insufficiency (FXPOI),

Fragile X Associated Neuro-psychiatric Conditions (FXANC)
and Fragile X Various Associated Conditions (FXVAC).

Discover our Network of Fragile X Organizations and their websites


Visit our websites

Fragile X Syndrome

… is the most common inherited cause of intellectual disabilities.

… is a genetic condition affecting about 1 in 5,000 people (read more);

… affects about 150,000 people in Europe and is considered a rare disease.

However …

… over 2,000,000 people in Europe alone carry the genetic condition that can cause Fragile X syndrome

Download our leaflets: 


Genes don’t know borders!

In May 2011, representatives from eight European Fragile X family associations plus one from Israel came together to meet in Amsterdam. It was a fantastic feeling to be together and discuss the many common issues related to Fragile X, our families and our associations.

We are thankful to Eurordis, the European organisation for rare diseases, for their support, which enabled us to come together and we decided to stay together, to work together on projects and bring the European idea to life.

We now have a common Fragile X awareness day,’s the 10th of October in roman numerals ! Please join with us every X.X. to raise awareness of Fragile X.

We are working together, combining our strengths to improve the lives of families affected by Fragile X through:

  • common brochures about Fragile X, FXPOI and FXTAS in different languages;
  • information exchange on medical research and promotion of new reference centres for Fragile X;
  • a Facebook page and a website giving links to all of our member associations ;
  • surveys to better understand Fragile X families, their day-to-day life, concerns and expectations.