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 738 member organisations in 65 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 RareConnect.org social forum allows patients to interact in a moderated setting. We also facilitate the networking of specific rare disease Help Lines across Europe.

 

 

EURORDIS Awards

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

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EURORDIS eNews

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

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Campaign for a European Year for Rare Diseases

Join the campaign to make 2019 the European Year for Rare Diseases. 

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EURORDIS TV

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

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Rare Disease Day

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

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

The leading conference gathering all rare disease stakeholders in Europe

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EURORDIS Black Pearl Evening

The aim of the EURORDIS Black Pearl Evening is to celebrate Rare Disease Day and foster solidarity and hope for rare disease patients throughout Europe

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EURORDIS Membership Meeting

Every year EURORDIS organises its Membership Meeting in a different European city. This is an occasion for patient representatives to gather and learn from each other

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RareConnect

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

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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

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Policy Event

EURORDIS organises an annual Policy Event in Brussels on the occasion of Rare Disease Day to raise awareness and move forward key policies benefiting people living a rare disease

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EURORDIS InfoHub

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

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Help Lines

The European Network of Rare Disease Help Lines provides support and allows national and disease specific help lines across Europe to share information

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Rare!Together

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

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EURORDIS Social Media

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

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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