EURORDIS past surveys

Over the last decade, EURORDIS has led several large-scale transnational surveys collecting the expectations and experiences of people affected by rare diseases:

Rare Barometer Voices surveys

Rare barometer infographic

The below surveys have been conducted through Rare Barometer Voices:

Other surveys

  1. Rare Disease Patient Registries 2013
  2. Off-label Use of Drugs by Rare Disease Patients, conducted through the EURORDIS DITA (Drug Information, Transparency and Access) Task Force 2012
  3. Rare Disease Patient Access to Orphan Drugs 2011
  4. European Rare Disease Patient Groups in Research: Current Role and Priorities for the Future 2010
  5. Rare Disease Patient Access to Orphan Drugs 2009
  6. Decide – Deliberative Debates on Controversial Issues in Rare Diseases 2008-2011
  7. Rare Disease Diagnosis and Access to Care 2003-2006 (EurordisCare 2 on Diagnosis) & 2006-2008 (EurordisCare 3 on Access to Care)


Page created: 08/01/2016
Page last updated: 23/06/2021
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