New publications

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…

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…

Altered developmental trajectories of verbal learning skills in 22q11.2DS : associations with hippocampal development and psychosis. In this video, Caren Latrèche presents the results of a recently published study on…

Our purpose in life: Adriana’s happiness. When you become pregnant you always have a fundamental objective, that is for the baby to be healthy. In our case, the pregnancy went…