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EURORDIS InfoHub helps identify reliable rare disease information for patients and families

November 2013

EURORDIS Info HubThese days, the Internet is the first place people living with a rare disease often find themselves. Searching for rare disease related information that patients and families can easily understand and trust can be a frustrating and scary experience.

To address this need, EURORDIS has launched a new service: the EURORDIS InfoHub.

The EURORDIS InfoHub has been developed to answer three basic needs: How to find quality rare disease information on the Internet; Where to find quality rare disease information on the Internet; and as a Tool to provide access to search results based on an index of affiliated patient organisation websites.

The service includes video tutorials aimed at helping optimise the search and evaluation of medical information on the Internet, especially for rare diseases, including tutorials on optimising your Google Internet search, how to search databases for rare disease information, and evaluating health information on the Internet. Video tutorials also teach how to use tools in order to stay up-to-date on rare disease information.

The InfoHub also includes a classification of over 40 online resources for rare diseases and orphan medicines, each one with a short description. It aims at providing patients and families with a large scope of reliable and helpful information sources, organised through categories for easy navigation. This selection of websites is based on criteria developed and officially adopted by EURORDIS. If you would like to suggest a particular site for inclusion in this classification please read our inclusion criteria and contact us.

Searching the web can result in a large amount of often irrelevant or unqualified information. In order to combat this problem, the EURORDIS InfoHub includes a custom rare disease search engine. This is a search engine whose results are based on EURORDIS’ selection of websites. This search will provide results from the web pages of patient organisations who are members of EURORDIS as well as trusted, validated reference websites such as the pan-European portal for rare disease and orphan medicines information and the USA medical research agency NIH.  

Louise Taylor, Communications and Development Writer, EURORDIS