EURORDIS celebrates 20 years

2017 marks the 20th anniversary of EURORDIS-Rare Diseases Europe.

The rare disease community, including all rare disease patient organisations and their partners, can be deservedly proud of its achievements over the last two decades.

Read more about achievements of the rare disease community over the past 20 years.

The landscape has changed drastically during this time. We have gone from near ignorance to the recognition of rare diseases as a public health priority in Europe.

EU law now incentivises companies to develop orphan medicines. European expertise and innovative technologies that can potentially benefit people living with a rare disease have been developed.

Most EU Member States now have national rare disease strategies and specialised centres of care. Rare disease research is stronger and recognised for its excellence.

The rare disease patient community is bigger, better connected and highly skilled with great leaders at its helm. Its spirit is collaborative across very different diseases, countries and stakeholders in Europe. Patients are now being taken seriously and listened to by policy makers, researchers and companies. Patient centricity has been the buzz term of the past decade.

The future

EURORDIS looks to the future with great energy and drive. Building on collective expertise from experience and shared values, together we will continue to tackle the new challenges that lie ahead.

Patient engagement will be the buzz term of the next decade; patient engagement in research, in healthcare services, in medical and social care and in the lifecycle of medicinal products.

EURORDIS strives to create the transformational change that rare disease patients and their families need by:

  • Increasing awareness of rare diseases among a larger public and key stakeholders.
  • Establishing rare diseases as a public health priority in the face of new challenges.
  • Providing a cohesive voice that represents all patients and diseases, making this voice international.
  • Supporting patient advocacy based on patients’ knowledge.
  • Engaging patients at all relevant levels to ensure the effective implementation of new policies and legislation in research, therapies and healthcare, which are relevant to the needs of patients.
  • Empowering patient advocates and patient organisations by building their capacities to advocate for the need of people living with a rare disease, by providing them with information and by connecting them across the rare disease community.


Read the full article written by Yann Le Cam, EURORDIS Chief Executive Officer, and Terkel Andersen, President of the Board of Officers, on how EURORDIS and the rare disease community will tackle the challenges that lie ahead.

Working towards better lives and cures for people living with a rare disease.

Page created: 20/03/2017
Page last updated: 21/03/2017
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