- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
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:
- Share and protect our health data: Rare disease patients’ preferences on data sharing and protection January 2020
- An insight into the participation of rare disease patients in research February 2018
- Juggling care and daily life: The balancing act of the rare disease community May 2017
- Access to treatment: unequal care for European rare disease patients February 2017
Other surveys
- Rare Disease Patient Registries 2013
- Off-label Use of Drugs by Rare Disease Patients, conducted through the EURORDIS DITA (Drug Information, Transparency and Access) Task Force 2012
- Rare Disease Patient Access to Orphan Drugs 2011
- European Rare Disease Patient Groups in Research: Current Role and Priorities for the Future 2010
- Rare Disease Patient Access to Orphan Drugs 2009
- Decide – Deliberative Debates on Controversial Issues in Rare Diseases 2008-2011
- Rare Disease Diagnosis and Access to Care 2003-2006 (EurordisCare 2 on Diagnosis) & 2006-2008 (EurordisCare 3 on Access to Care)
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative