22q11 day Once again this year, a number of cities across Europe took action to raise awareness of 22q11 syndrome by lighting up their emblematic buildings in red: UK, Ireland,…
News
-
-
The 22q11 conference in Dublin is coming up on November 18th and 19th! This conference aims to bring together European families, clinicians, scientists, and researchers to share knowledge and expertise…
-
Children living with 22q11DS often have a range of health problems which can make life more challenging for themselves, as well as their parents and/or other family members. Studies have…
-
Out of over 60 nominated projects, the 22q11 MOOC has won first prize in the communication category of the 2023 Rare Diseases Award of the Italian Rare Diseases Federation. The…
-
Download the following document in your language for all the information about the Conference : English French Swedish Spanish Serbian Polish Netherlands Italian German Danish Croatian We are pleased to…
-
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 …