Blog

In early April, colleagues from the ENCORE participated in the ERN ITHACA EuroNDD workshop in Warsaw. During this international meeting, more than 250 healthcare professionals and researchers from across Europe came together to exchange knowledge and experiences.

Some highlights were the keynote lecture “The road from diagnosis to intervention: 15 years of ENCORE Expertise Care for Angelman Syndrome” 530 by pediatrician Karen Bindels de Heus, and several sessions on supported communication (AAC), provided by Maartje ten Hooven-Radstaake and Cindy Navis. Presentations on the use of AAC in clinical practice and the transition from care to adulthood, by Maartje ten Hooven-Radstaake and Laura de Graaff, among others, also attracted considerable interest. In addition, PhD students and Cindy Navis presented several posters regarding their research into Angelman syndrome, Duplication 15q syndrome, CAMK2 syndrome, and communication.

There was a strong focus on European cooperation, for example in the areas of guidelines, patient registries, and patient-reported outcomes (PROMs). The workshop yielded valuable insights and new contacts that contribute to further improving care and research for people with rare neurodevelopmental disorders. There was also interest in ENCORE's multidisciplinary approach.

The conference yielded valuable insights and new contacts that contribute to further improving care and research for people with rare neurodevelopmental disorders.