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, it’s the 10th of October, or in roman numerals: X.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 on the same pattern 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 member associations in Europe;
– a multilingual glossary specializing on fragile X to help parents to understand medical information;
– surveys to better understand fragile X families, their day-to-day life, concerns and expectations.