Contributing to rare disease health policies

EURORDIS plays an active role in the processes to develop and implement national and European-level policies that bring real solutions to people living with rare diseases in the areas of prevention, diagnostics, care, research, medicines development, social services, information, education, and more.

 

Policies

EURORDIS makes key contributions toward the development and adoption of important rare disease and orphan medicines policies

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Major Recommendations shaping RD policy

The EU Committee of Experts on Rare Diseases (EUCERD, 2010-2013) and the European Commission Expert Group on Rare Diseases (CEG-RD, 2013-2016) were established to support EU policy on rare diseases

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EU Joint Actions on Rare Diseases and on Rare Cancers

Involving a broad range of stakeholders across Europe to shape policies, make recommendations aimed at ultimately improving the lives of patients.

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Social policy & integrated care

EURORDIS promotes the integration of rare diseases into social policies and also integrated care for rare disease patients and their carers.

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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