Weblinks

Network for “Rare Malformation Syndromes, Intellectual and Other Neurological Developmental Disorders (NDDs)”

SwissITHACA is a patient-centred network that aims to improve highly specialised, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurological developmental disorders. It is closely linked to and collaborates with the European Reference Network ERN ITHACA.

SwissITHACA - SGMG

Support association for children with rare diseases.

In order to provide affected families with reliable support and guidance on their new path in life following a rare disease diagnosis, the non-profit support association for children with rare diseases was founded in 2014 by entrepreneur Manuela Stier.

It is the largest Swiss network for children and young people with rare diseases and their families.

Rare diseases in Switzerland - Support association for children

The Center for Rare Diseases Zurich is an interdisciplinary collaboration between the University Children's Hospital Zurich, the University Hospital Zurich, the Balgrist University Clinic and the Institute of Medical Genetics at the University of Zurich.

Centre for Rare Diseases Zurich – USZ

ERN-ITHACA is a patient-oriented network that aims to meet the need for highly specialised healthcare for patients with rare malformation syndromes and rare intellectual or other neurological developmental disorders, whether genetic (genomic or chromosomal) or environmental in origin, both diagnosed and undiagnosed.

ERN-ITHACA - European Network for Rare Malformation Syndromes

The National Coordination Center for Rare Diseases (kosek) is a coordination platform for improving the care situation for people affected by rare diseases. To this end, kosek carries out projects with healthcare providers and always involves those affected through their patient organisations.

kosek – National Coordination Center for Rare Diseases

Orphanet is a unique resource that aims to collect and expand knowledge about rare diseases in order to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet provides high-quality information on rare diseases and grants equal access to this information for all stakeholders. Orphanet also maintains the Orphanet Rare Disease Nomenclature (ORPHA code), which contributes significantly to improving the visibility of rare diseases in information systems used by health and research institutions.

Orphanet