Helping you to find better quality rare disease information on the internet

Very often the internet is the first place people living with a rare disease find themselves. Searching for rare disease related information that patients and families can easily understand and trust can be a frustrating and scary experience. The EURORDIS InfoHub has been developed to meet three basic needs: How to find quality rare disease information on the internet; Where to find quality rare disease information on the internet and a tool to provide access to search results based on an index of affiliated patient organisation websites


How to find quality information on the internet

Video tutorials aimed at helping optimize search and evaluation of medical information on the Internet, especially for rare diseases


A custom rare disease search engine

Use the EURORDIS InfoHub custom search engine to browse a selection of the most reliable and helpful rare disease information websites


Where to find quality information on the internet

Browse the EURORDIS InfoHub classification of online resources on rare diseases and orphan drugs

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases