EURORDIS past surveys

Rare Barometer Voices surveys

Rare barometer infographic

The below surveys have been conducted through Rare Barometer Voices:






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

Other surveys

  1. Rare Disease Patient Registries 2013
  2. Off-label Use of Drugs by Rare Disease Patients 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: 22/11/2018
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