Information & Networking

EURORDIS empowers people living with a rare disease by encouraging them to share information, learn from each other, and join forces. We believe that our strength is in numbers and through acting together in a coordinated way we can move forward solutions.

EURORDIS has 1000 member organisations in 74 countries, representing altogether more than 4000 different diseases. EURORDIS uses its pivotal position to build the capacity of patients and organisations to inform, educate, and raise awareness about rare diseases.

We initiated and coordinate International Rare Disease Day, held on the last day of February each year. The annual Membership Meeting, the European Conference on Rare Disease and Orphan Products (ECRD), and the Rare Disease Day Policy Event bring stakeholders together to exchange knowledge and share resources. The EURORDIS InfoHub, Policy Fact Sheets and EURORDIS TV are amongst many resources available on the EURORDIS website that keeps the rare disease community informed on current topics in the field.

We also promote instruments and services that foster the exchange between patients and organisations. The social forum allows patients to interact in a moderated setting. We also facilitate the networking of specific rare disease Help Lines across Europe.



Rare disease help lines

Rare disease help lines offer social, psychological and information solutions to people living with a rare disease.


EURORDIS Black Pearl Awards

The EURORDIS Black Pearl Awards recognise outstanding accomplishments, excellence and leading work in the field of rare diseases.



Stay up-to-date with what is happening in the rare disease community!



EURORDIS TV identifies and gathers the best rare disease-related videos into one convenient venue


Rare Disease Day

Held on the last day of February, Rare Disease Day is an annual international awareness-raising event coordinated by EURORDIS


The European Conference on Rare Diseases & Orphan Products (ECRD)

The leading conference gathering all rare disease stakeholders in Europe


EURORDIS Membership Meeting/General Assembly

Each year, EURORDIS holds a general assembly attended by close to 200 of its member organisations. These events are always excellent networking opportunities for patients to meet other patient advocates from around the world.


RareConnect, the online network for rare disease communities, brings together patients, families, and groups from around the world who might otherwise be isolated


EURORDIS Policy Fact Sheets

The EURORDIS Policy Fact Sheets provide an easy-to-use informational tool that facilitates participation in developing national and European policies



EURORDIS created the Rare!Together programme to assist the process of creating, operating, and managing European Rare Disease Federations


EURORDIS Social Media

Particpate in the conversation on Rare Disease Day’s Social Media

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 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