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

The below surveys have been conducted through Rare Barometer Voices:
Other surveys
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Rare Disease Patient Registries 2013
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Off-label Use of Drugs by Rare Disease Patients, conducted through the EURORDIS DITA (Drug Information, Transparency and Access) Task Force 2012
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Rare Disease Patient Access to Orphan Drugs 2011
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European Rare Disease Patient Groups in Research: Current Role and Priorities for the Future 2010
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Rare Disease Patient Access to Orphan Drugs 2009
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Decide – Deliberative Debates on Controversial Issues in Rare Diseases 2008-2011
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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: 07/12/2020