Sponsors and Partners

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.

ELA - Association Européenne contre les Leucodystrophies

ELA Switzerland contributes to the financing of the Orphanet Switzerland team.

FSRMM - Schweiz stiftung für die erforschung der muskelkrankheiten

The Foundation aims to promote scientific research on muscle diseases in Switzerland. The foundation contributes to the financing of the Orphanet Switzerland team.

Fondation Téléthon Action Suisse

The foundation has supported the Orphanet Switzerland team with a financial contribution.

Fondation privée des HUG

The HUG Private Foundation is the Foundation of the University Hospitals of Geneva (HUG) and the Faculty of Medicine of the University of Geneva (UNIGE). Its aim is to finance essential projects in favour of medical knowledge, comfort and quality of care, for the benefit of all patients. The foundation contributes to the financing of the Orphanet Switzerland team.

EJP-RD - The European Joint Programme on Rare Diseases

As the Orphanet network is a partner in this programme, Orphanet Switzerland receives funding to identify, collect, and register research data (research projects, clinical trials and patient registries) focused on rare diseases at national level.

PARTNERS

kosek - coordination nationale des maladies rares

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)

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.