ORPHANET
Since April 2010, CIBERER has been the Spanish partner of Orphanet, the leading European information portal on rare diseases and orphan drugs. Established in France in 1997, it quickly expanded to other European countries and is currently present in around 36 countries in Europe and neighbouring regions.
Orphanet is aimed at all individuals involved in the field of rare diseases, and its objective is to contribute to improving the diagnosis, care, and treatment of people affected by these conditions. At present, the portal provides information on approximately 9,000 rare diseases, 1,200 orphan drugs, 2,400 patient organisations, 19,500 healthcare professionals, and 5,700 specialised clinics in low-prevalence conditions.
The information is available in seven languages, including Spanish, and includes:
- Rare disease inventory: a collection of summaries and review articles on low-prevalence conditions prepared by experts from the international medical community and regularly updated.
- Orphanet directory of healthcare services: information on specialised clinical services, clinical laboratories, diagnostic tests, research projects, clinical trials, patient registries, and biobanks.
- Directory of patient organisations, in collaboration with EURORDIS and FEDER, the European and Spanish federations respectively of support groups for people with rare diseases and their families.
- Search for rare diseases by clinical signs and classifications to support differential diagnosis of these conditions.
- Public database of orphan drugs: provides information on medicines that have received orphan drug designation and/or marketing authorisation for the treatment of rare diseases.
- OrphaNews Europe: a free electronic newsletter published every two weeks, reporting on the scientific, social, and political landscape related to low-prevalence diseases in Europe, including new publications, conferences and other updates.
Orphanet Spain Team:
- Coordinator: Dr. Francesc Palau (Scientific Director of CIBERER)
- Scientific Committee: Composed of national experts from different areas of knowledge.
- Project Manager: Dr. Virginia Corrochano
- Scientific Documentalist: María Elena Mateo
- Contact email: [email protected]
Useful links:
