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


Scientific Publications & Guidelines

Browse a listing of publishers and rare disease journals



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


Orientation & Help

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


Web2.0 services & tools

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


Regulations & Policies

Websites dedicated to public health and rare disease policy

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