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.
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.
Detailed network structure and members
NEWS:
April 2024: We successfully submitted the application for the recognition of SwissITHACA as a reference network to the kosek. SwissITHACA consists of six candidate reference centers, four network associated centers, two health professional organisations and 11 patient organisations/support groups.
October 2024: application of the candidate reference centers of SwissITHACA as a supporting partner consortium to ERN ITHACA
December 2024: SwissITHACA accepted by ERN ITHACA as a supporting partner at the ERN ITHACA board meeting in Bucharest
March 2025: kosek evaluation phase I successfully finished, evaluation goes now into phases II and III; dates for network and reference center evaluations are set for summer 2025
Save the date: SwissITHACA event for patients/families and health professionals in Bern (hybrid and in presence, Inselspital Bern, language German), June 11th 15:00-18:30, «Gedeih- und Ernährungsstörungen bei seltenen Syndromen: Erkennen und Behandeln«, detailled program and infos will follow
For further information, please contact: swissITHACA@sgmg.ch