-
-
Hello, I’m Leonie, I’m almost ten years old and I live in Colligny, a small village in France. I was diagnosed with 22q11 syndrome at the age of 26 months…
-
Eurordis, the European alliance for people living with a rare disease in Europe, is conducting its new Rare Barometer survey on the opinion of people living with rare diseases on…
-
Does happiness mean being someone ? I’m not an engineer, I’m not a writer, I don’t have a B.A. or even a college diploma. However, that does not make me…
-
We are conducting a survey targeted at adults affected by 22q11. With this survey, we are aiming to better understand your needs and how we can offer support. If you…
-
It has been two years since we shared the previous version of this major document. There are two versions: Updated clinical practice recommendations for managing adults with 22q11.2 deletion syndrome …
-
The 2022 22q11 Awareness Day was a blast throughout Europe and beyond ! Local organizations displayed an impressive level of creativity in finding ways to bring the public’s eye on…
-
On the occasion of the 22q11 awareness day and the release of the MOOC, we will organize next Tuesday (November 22nd at 8pm) a live session animated by different speakers…
-
The 22th November is the international day for 22q11 deletion syndrome. We invite public and private organizations to share the information by illuminating their buildings in red or to share…
-
After some months of hardwork, we are proud to present our MOOC (Massive Open Online Course) about 22q11DS. Thanks to Stephan Eliez, Maude Schneider, Thérèse van Amelsvoort, Ania Fiksinski, Corrado…