Board

I am a founding member of Relais 22, the French speaking Belgian 22q11 association. I have also founded RADIORG, the Belgian Alliance of Rare Diseases Associations.

I participate to the 22q11 Europe adventure as I am convinced that we are stronger together and that we can further improve the link between patients associations and researchers.

Professor Faculty of Medicine and Medical Director of Child Psychiatry and Special Education, Office Médico-Pédagogique Geneva.

He is specialized in the use of new brain imaging techniques. Since 1995, he has been conducting research on 22q11 microdeletion and is currently leading a program to monitor a longitudinal cohort of affected children, adolescents and adults, funded by several Swiss and international research funds.

Maude Schneider obtained her Master degree in psychology from the University of Geneva in 2009. She then started a PhD with Prof. Stephan Eliez and Prof. Martial Van der Linden to study social difficulties in adolescents and young adults with 22q11.2 deletion syndrome.

In 2015-2016, she was trained in KU Leuven (in the lab of Prof. Myin-Germeys) to use the Experience Sampling Method (ESM), a structured diary technique that allows to collect information in the flow of daily-life. She is now working as a senior research at the University of Geneva is conducting studies on social impairments in neurodevelopmental disorders using the ESM technique. In parallel to her research activities, she completed her postgraduate training in child and adolescent psychotherapy and is working as a clinical psychologist at Fondation Pôle Autisme in Geneva.

I am one of the founders and the president of the Swedish Family association. I have an adult son who was diagnosed with 22q11 DS when he was 13 years old.

Our main goals for the associations are to give advice and support to all members, to spread information about the syndrome, to collaborate with and support research and to collaborate with 22q11 Deletion Syndrome groups in other countries in order to exchange information.

I am president of the French organisation, Génération 22.

My daughter was diagnosed when she was 9 years old. It was really important for me to understand what was 22q11 Deletion 22q11. I am convinced that it is better to be well informed to deal with this rare disease.

In France, Génération 22 organizes national congresses every two years. We collaborate with all stakeholders and specialists concerned by 22q11 DS to improve knowledge and better support families. With 22q11 Europe, we can share best practices and have a broader vision of this complex syndrome.

Silvia Riccio, Board Member

Daniel Graser, Board Member

Julie Wootton, Board Member

Caecilie Andersen, Board Member