Rare Barometer survey on the future of rare diseases

Are you affected by a rare disease or caring for someone affected by a rare disease?

Have your say on the future of your rare disease!

Participate now


It should take no more than 15 minutes to complete and closes on 4 January 2021. This survey will enable us to gather your opinion on the future of your rare disease and give us the possibility to communicate facts and figures to decision-makers, so that your opinion is taken into account when shaping the future of rare diseases.

The goal is to voice the specific needs of rare disease patients within the next 10 years and to propose practical solutions to improve their daily life.

Through asking questions on your needs and preferences regarding early diagnosis of rare diseases, medical and social research, access to care and treatments, remote health care (such as e-consultations and e-prescriptions) and cross-border healthcare, we will be able to better understand how to shape the future of rare diseases.

This survey is part of Rare 2030 foresight study. For more information please visit rare2030.eu

We will share the overall results of the survey with you and communicate them (without communicating your individual responses) to decision-makers. Your contact details and any written records of your responses during the study will be kept in secure storage which only the research team can access.

If you have any questions while taking part in this survey, you can contact rare.barometer@eurordis.org

If you want to get an insight into the questionnaire prior to responding to the survey see this document.

Rare 2030 survey communications toolkit

Spread the word and encourage your members and networks to make their voice heard and respond to the survey. Use the communication materials on this page: eurordis.org/rare2030surveytoolkit

Page created: 02/12/2020
Page last updated: 02/12/2020
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