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. Provisional programme: 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) |
This conference is co-organised by the Xtraordinaire association, the DéfiScience and AnDDI-Rares rare disease health networks, with the support of the European ITHACA network and the American DDX3X Foundation. |