swissITHACA
network for “Rare malformation syndromes, intellectual and other neurodevelopmental disorders (NDDs)”
SwissITHACA is a patient-centered network with the aim to improve highly specialized, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders. It is closely related to and collaborating with the European Reference Network ERN ITHACA (https://ern-ithaca.eu/).
Supported by the Swiss Society of Medical Genetics (SGMG), SwissITHACA is currently coordinated by the core group of five university centers:
- University Hospital Bern
- Universitätsspital Basel/University Children’s Hospital Basel
- Universität und Universitätsspital Zürich/Kinderspital Zürich/Kinder- und Jugendpsychiatrie Zürich/Balgrist Zürich
- HUG Genève
- CHUV Lausanne
Additionally, patient organisations are represented in the core group by Noonan-Syndrom Schweiz.
NEWS:
- April 2024: We successfully submitted the application for the recognition of SwissITHACA as a reference network to the kosek. SwissITHACA consists of six reference centers, four network associated centers, two health professional organisations and 11 patient organisations/support groups.
2024 EVENTS:
- August 29th: “Genetik und Epilepsie”, organized by Epilepsie-Liga in collaboration with Epi-Suisse and SwissITHACA; location: Inselspital Bern and hybrid; 16:00-18:00 presentations for health care professionals (https://www.epi.ch/veranstaltung/fachveranstaltung-genetik-und-epilepsie/); 19:00-21:00 presentations for patients and families (https://www.epi.ch/veranstaltung/genetik-und-epilepsie/)
- November 7th, SwissITHACA network meeting, start: 14:30, location: Inselspital Bern (and hybrid); please find the details and program here
For further information, please contact: swissITHACA@sgmg.ch