Author(s): Weinreich SS, Mangon R, Sikkens JJ, Teeuw ME, Cornel MC
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Abstract Orphanet is a European initiative that aims to improve the management and treatment of rare diseases. It comprises a database dedicated to information on rare diseases and orphan drugs, and offers services adapted to the needs of patients and their families, health professionals, and researchers. The database can be accessed through the website (www.orpha.net) and has some interesting options for searching, for example research projects, support groups or searching by clinical signs. Health professionals are encouraged to add activities concerning rare diseases to the database.
This article was published in Ned Tijdschr Geneeskd
and referenced in Clinical & Medical Biochemistry