Orphanet
Orphanet
Orphanet (/ɔːrfəˈnɛt/) is a unique resource, gathering and improving knowledge on rare diseases. It is a database dedicated to information on rare diseases and orphan drugs (available in 40 countries).
Etymology
The term "Orphanet" is a combination of "orphan" and "net", referring to its focus on orphan drugs and its nature as an online network.
Description
Orphanet was established in France in 1997 to gather information on rare diseases. This initiative became a European endeavour from 2000, supported by grants from the European Commission. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHA code), essential in improving the visibility of rare diseases in health and research information systems.
Related Terms
- Orphan Drug: A pharmaceutical agent that has been developed specifically to treat a rare medical condition, the condition itself being referred to as an orphan disease.
- Rare Disease: A disease that affects a small percentage of the population. Most rare diseases are genetic, and are present throughout a person's entire life, even if symptoms do not immediately appear.
- European Commission: The executive branch of the European Union, responsible for proposing legislation, implementing decisions, upholding the EU treaties and managing the day-to-day business of the EU.
See Also
External links
- Medical encyclopedia article on Orphanet
- Wikipedia's article - Orphanet
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