Tag Archives: Orphanet

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Rare disease patient groups using Orphanet effectively

Orphanet is the most important database in the European Union for rare diseases and orphan drugs for the general public.  It contains information about 6 000 diseases and is freely accessible….

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Answering general questions on rare diseases

by Robert Pleticha The RareConnect team receives many general rare disease questions by email through the contact section of the communities. For example, What is/are the treatments for paraneoplastic neurological syndrome…

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Finding information on rare diseases

Rare disease patients can often find quality information on their rare disease from patient support associations, online social networks, and their doctor. But sometimes a disease does not show up…