22q11 Deletion Syndrome: development trajectories across the lifespan

med Prof Ann Swillen, University of Leuven

Seminar for fagfolk om 22q11

17. september 2021

Det er med stor fornøjelse, at vi kan byde velkommen til et fagseminar om 22q11 DS med Prof. Ann Swillen fra Leuven Universitet i Belgien. Ann er en internationalt anerkendt kapacitet på området, og hun vil give en indsigt i syndromet og de komplekse udviklingsmæssige udfordringer, der følger med på forskellige stadier i livet. Desuden vil hun dele de erfaringer, som hun har gjort i forbindelse med den nødvendige multi-disiplinære tilgang til syndromet; medicinsk, psykisk og uddannelse mv.

Foredraget er arrangeret af patientforeningen 22q11-Danmark og retter sig til alle faggrupper, der beskæftiger sig med børn og unge med 22q11.

Foredraget vil være på engelsk – og vil blive live streamet.

Hvornår: 17. september 2021, kl. 13:45-16:15

Hvor: Rigshospitalet, Blegdamsvej – Auditorium 93: Benyt opgang 93

Program

13-30-14.00 – Registrering

14:00-14:10 – Velkomst v/. formanden for 22q11 Jesper Kildegård Poulsen

14.10-15:00 – Developmental trajectories across the lifespan in 22q11 22q11 DS

15:00-15:15 – Pause med let forfriskning

15:15-16:15 – Fortsat – Developmental trajectories across the lifespan in 22q11 DS

16:15 – Afslutning

Oplægget vil være en åben dialog, og der vil være rig mulighed for at stille spørgsmål undervejs

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Tilmelding: Seminaret er gratis men tilmelding er nødvendig – Frist for tilmelding er d. 6. sept. 202. Da der er begrænset med pladser, vil pladserne blive fordelt efter først-til-mølle-princip. Der tages de nødvendige forholdsregler ift. Covid. Tilmelding nedenfor.

Om Ann Swillen

Ann Swillen is both a Professor at the Department of Human Genetics, University of Leuven in Belgium, where she leads the Lab for Behaviour and Neurodevelopment (https://gbiomed.kuleuven.be/english/research/50000622/laboratories/laboratory-for-behaviour-and-neurodevelopment), and works clinically as clinical and educational psychologist at the Centre for Human Genetics, University Hospital Gasthuisberg Leuven. Prof Swillen is an internationally recognized authority in the field of development, cognition and behaviour in 22q11 DS; she has authored more than 100 peer reviewed scientific publications in the field of medical genetics and behavioural phenotypes. Since 1994, she is the coordinator of the multidisciplinary clinic for 22q11 DS at the Centre for Human Genetics Leuven, and a member of different international expert panels (e.g. international 22q11 DS Foundation, MINDDS), and co-founder of the International Brain-Behaviour 22q11 DS Consortium (2011), the 22q11 DS Society (2014) and the G2MH network (2018). In 2016, she received the Angelo Di George Medal, an internationally recognized award for her exceptional contribution to the knowledge on 22q11 DS and for her commitment to patients and families; in 2020 she was awarded with the Edelweiss Award (in the category ‘health professionals’ from Rare Diseases Belgium (Radiorg) because of her incredible commitment to the care of patients with rare diseases and, in particular, her open and clear communication with patients and parents. A concrete example of this is the psycho-educational tool ‘The genetic puzzle’ (www.geneticpuzzle.eu) that she recently developed. Professor Swillen also organizes Dale & Do Sessions for teenagers with a 22q11 DS to talk about their thoughts and feelings and increase their self-confidence.