Reliable and helpful websites selected for you

EURORDIS has created a classification of online resources on rare diseases and orphan drugs, each one with a short description. It aims at providing patients and families with a large scope of reliable and helpful information sources, organized through categories for easy navigation.

 

 

Diseases & Treatments

Websites include databases, orphan drug information, and clinical research portals

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Scientific Publications & Guidelines

Browse a listing of publishers and rare disease journals

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Networks

A listing of professional networks and registries as well as some key rare disease federations

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Orientation & Help

A listing of information centres and information gateways providing rare disease information

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Web2.0 services & tools

A listing of social networks, listservs, and interactive tools allowing patients to connect and stay up to date

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Regulations & Policies

Websites dedicated to public health and rare disease policy

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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