Medicines & therapies

EURORDIS is active in many key orphan medicines areas, including at the European Medicines Agency, where EURORDIS is a member of relevant scientific committees. EURORDIS also plays a pivotal role in obtaining EU level legislation that encourages the development of medicinal products for rare diseases. We are engaged in a number of EU-level projects and activities. Other initiatives focus on improving equitable access to rare disease treatments throughout Europe.


Involvement in EU Policies

EURORDIS is active in the development and implementation of key European policies that facilitate the development and equitable distribution of orphan medicines


Medicines Development

EURORDIS fosters the development of rare disease medicinal products via the EURORDIS Round Table of Companies, participation in the International Rare Disease Research Consortium and the European Medicines Agency, and other activities


Improving Access to Medicines

EURORDIS is involved in several initiatives to improve access to rare disease medicines across Europe


Patient Empowerment and Training

EURORDIS’ training programmes and resources strengthen the capacity of rare disease patients’ representatives, empowering participants to take an active role in medicine development processes


Past and current projects

EURORDIS has a long history of participation in key EU-level projects relevant to rare diseases and orphan medicines



EURORDIS promotes medicines safety by gathering crucial information for identifying and reporting adverse effects from medicines

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