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Board

Paul Havelange, President

 

Relais 22, Belgium

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.

Stephan Eliez, Vice President

 

Connect 22, Switzerland

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.

Claire Hennessey, Secretary

 

Max Appeal, UK

Claire is the Development Officer for Max Appeal, the Uk registered charity supporting families affected by 22q11 Syndromes. Claire’s 22q11 journey began when her daughter was diagnosed with 22q11 Deletion Syndrome in 2000. She is well aware of the many challenges facing children and their families when seeking medical and educational support to ensure children with this complex condition achieve the best possible outcomes. The creation of 22q11 Europe provides further opportunities to work collaboratively with others with common goals.

Mara Hernández, Board Member

 

22q Catalunya, Spain

Mara is affiliated and active with the Associació Catalana de la Síndrome 22q, one of the first regional associations founded in Spain. Since 2012, they have been welcoming families and working with the institutions to raise awareness and improve the quality of life of those with 22q11 Deletion Syndrome in their area.

Mara is a member of the Board of the European Association, as she believes we have to broaden our community to increase awareness, promote investigation and share knowledge. She is mother to Adrià and Marc, the latter affected by 22q11DS.

Thomas Franken, Board Member

 

KiDS-22q11 e.V., Germany

My name is Thomas Franken. I have two children, the youngest of whom has the 22q11 deletion.

Since 2010 I have been a board member of the German self-help organization KiDS-22q11 e.V., since 2016 CEO. I have a university degree in economics and a masters degree in tax law. Professionally, I am the owner of a home care service, a lecturer at a college and an organizational consultant in the field of health care and non-profit organizations.

Maude Schneider, Scientific Coordinator

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.

Anette Norling, Board Member

 

22q11 Danmark, Denmark

Anette is the vice-chair of the 22q11 association in Denmark. 22q11-Danmark was founded in 2006 with the aim to support families as well as promote awareness of 22q11 in the Danish health care system,

Anette has three kids, the youngest with 22q11. Anette believes in the importance of sharing of knowledge of 22q11 and raising awareness in Denmark and among our partners in Europe and abroad, in order to improve the quality of lives of all with 22q11.

Francoise Neuhaus, Board Member

 

Génération 22, France

Conor McGurkin, Board Member

 

22q11 Ireland, Ireland