SwissITHACA

Reference 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. In February 2026, SwissITHACA was formally acknowledged by kosek (www.kosekschweiz.ch) as a reference network.

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.

Please click the following button to open the detailed network structure and members of SwissITHACA:

Detailed network structure and members

NEWS:

• February/March 2025: completed evaluation by kosek and formal acknowledgement of SwissITHACA as a reference network and acknowledgement of 6 SwissITHACA Reference Centers.
• December 2024: SwissITHACA accepted by ERN ITHACA as a supporting partner at the ERN ITHACA board meeting in Bucharest

EVENTS:

• Save the date: SwissITHACA event for patients/families and health professionals in Geneva (language French), May 20th, 2026, afternoon; topic: sleeping problems in rare syndromes, detailed program and further information will follow

PAST EVENTS:

• June 11^th 2025, 15:00-18:30, Gedeih- und Ernährungsstörungen bei seltenen Syndromen: Erkennen und Behandeln - Programm
• November 26^th 2025, 14:30-17:00, SwissITHACA network meeting in Bern and hybrid - Programm

OTHER EVENTS:

• April 9^th-10^th2026, Warsaw, EuroNDD 2026 - The European Workshop for a multidisciplinary view on rare genetic enurodevelopmental disorders
  • Invitation to the EuroNDD 2026 Workshop
  • Further information for the EuroNDD 2026 Workshop

CONTACT:

For further information, please contact: swissITHACA@sgmg.ch