- 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:
- The future of rare diseases: Leaving no one behind! full report
- H-CARE Survey full results
- H-CARE Survey condensed results
- Infographic: 'Your experience of COVID-19'
- 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)
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
We are grateful for the financial support of the EURORDIS website by:
This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
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