SPONSORS
HUG - Hôpitaux Universitaires de Genève
The HUG - University Hospitals of Geneva have been the headquarters of Orphanet Switzerland since 2001. They finance the salary for the coordinator (50%) and provide logistical and administrative support for the project. Since August 2023 they finance also the salary for the project manager (100%) and the information scientist (40%).
AEMO
The "Association Enfance & Maladies Orphelines" contributes to the financing of the Orphanet Switzerland team.
With Gratitude to Our Former Sponsors
kosek - National Coordination for Rare Diseases
GDK/CDS - Konferenz der kantonalen Gesundheitsdirektorinnen und ‑direktoren Haus der Kantone / Conférence des directrices et directeurs cantonaux de la santé
ELA - Association Européenne contre les Leucodystrophies
FSRMM - Schweiz stiftung für die erforschung der muskelkrankheiten
Fondation Téléthon Action Suisse
Fondation privée des HUG
EJP-RD - The European Joint Programme on Rare Diseases
PARTNERS
kosek - National Coordination for Rare Diseases
The National Coordination for Rare Diseases (kosek) is a coordination platform aimed at improving the care of people with rare diseases. Since 2019, Orphanet Switzerland and kosek have been working closely together on the evaluation and publication of centres of reference and the Swiss networks for rare diseases. Orphanet Switzerland also provides the Orphanet classifications by medical specialty for the designation of centres of reference.
Swiss National Science Foundation (SNSF)
The Swiss National Science Foundation (SNSF) funds excellent research at universities and other institutions – from chemistry to medicine to sociology. Orphanet Switzerland has an ongoing collaboration to identify SNSF-funded projects focused on rare diseases.
Swiss Rare Disease Registry (SRSK/RSMR)
The Swiss Rare Disease Registry aims to identify all people with a rare disease living and/or being treated in Switzerland. Orphanet Switzerland has a close collaboration with the registry, specially for the implementation of the Orphanet nomenclature in health systems.
OD4RD
Orphanet Switzerland participates as a guest in the WP4 of this European project, which aims to support the local implementation of ORPHAcodes in health information systems.
Faculty of Medicine of the University of Geneva
Since 2019, ongoing collaboration in which the students of the Biomedical Sciences Master from the Faculty of Medicine of the University of Geneva work through the academic year to produce Orphanet Disease Summary Texts for several pathologies.
ProRaris
Orphanet Switzerland played a role in the creation, in June 2010, of ProRaris, the Swiss Rare Disease Alliance. A close collaboration has been established to identify information services for patients and professionals both in the organisation and promotion of rare disease events, in order to increase public awareness of rare diseases in Switzerland.
MaRaVal
MaRaVal – maladies rares valais/seltene krankheiten wallis – is a non-profit cantonal patient association, founded in August 2017, addressing all Valaisans, patients affected by a rare disease and their relatives.
