|The DDX3X Commission of the Xtraordinaire association is pleased to announce that the first international conference on DDX3X syndrome will be held in Paris on 20 October 2023, followed by a families meeting on Saturday 21 October.|
The aim of the conference is to bring together doctors, families, researchers and all professionals in the field of care or educational support, in order to share knowledge and best practices, and thus encourage synergies.
Date: Friday 20 October 2023.
Time: from 09:00 to 17:30.
Place: Grand amphitheater of the GHU Saint Anne, 1 rue Cabanis, 75014 PARIS.
Pre-registration online HERE: free for families and students / 15 euros for professionals.
Round table discussion with families and health professionals: exchange on support practices in Europe.
Presentation of the French clinical study (Pr. David Geneviève and Dr. Valentin Ruault, France)
Language specificities of the syndrome (Pr. Angela Morgan, Australia)
Psychic signs in adolescence (Dr. Boris Chaumette, France)
Emotional difficulties (Pr. Diane Purper-Ouakil, France)
The BINGO study (Brain and Behaviour In Neurodevelopmental Disorders of Genetic Origin)(Dr. Kate Baker, Great Britain)
Boys with DDX3X variants ( Dr Milou Kennis, The netherlands)
Clinical points and new therapeutic approaches (Dr. Elliott Sherr and Dr. Steven Gray, USA)
Multidisciplinary Fetal Diagnostics Winter School – apply now!
Content The Winter School on Fetal Diagnosis organised by the ERN-ITHACA aims to address a learning gap in fetal phenotyping, genetic analysis, and data interpretation. As a single-day course it will include basic lectures and in depth-workshops on phenotyping, prenatal genomic testing, and the implications for genetic counselling. To finalize, the program will bridge the […]
ERN-ITHACA Research Workshop: December 9, Dublin – Save the date!
The ERN-ITHACA Board Meeting will take place on 8-9 December 2023 in Dublin, after the Patient Board Meeting on December 7, and this year we have decided to dedicate a full day (9 December) to the Research Workshop. The Research Workshop will conclude the Board Meeting with a cocktail farewell. The programme will be finalised […]
First international conference on DDX3X syndrome – October 20
The DDX3X Commission of the Xtraordinaire association is pleased to announce that the first international conference on DDX3X syndrome will be held in Paris on 20 October 2023, followed by a families meeting on Saturday 21 October. The aim of the conference is to bring together doctors, families, researchers and all professionals in the field of care or educational support, […]