Register to Rare
Receive invitations
to surveys
Take part
in the surveys

Why join us?

Rare Barometer is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies.

EURORDIS, the European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations. EURORDIS represents the voice of an estimated 30 million people living with a rare disease.

Rare Barometer is a EURORDIS initiative that aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public.

The programme was created because we believe that the views of the rare disease community need to be communicated as a diverse but unified voice to bring about change. By sharing your opinions and experiences you will help to achieve this goal.

The results of our studies and surveys are communicated to:

  • Patient organisations, so that they can use them to raise awareness among policy makers in their country
  • European and International-level policy makers and other influential figures so that they are made aware of actions that need to be taken for the rare disease community in Europe and internationally
  • The general public through our website, including health care providers and doctors, to inform them about rare diseases.
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Who can register?

Patients, parents, siblings or other family members, patient representatives and carers can register to share their experiences and thoughts.
Participants can register from any country in the world

How does it work?

Rare Barometer is an interactive project. After registering in Rare Barometer:

You will be sent an email to request your participation in each new survey related to subjects that concern you. You are free to decide which surveys you want to participate in.

**Next step – fill out the survey! The survey data will then be collated and analysed to provide data on a European, International and also national level, as well as according to specific diseases.

Finally, you will be sent the results of the survey by email so that you can get insight into what other people in similar situations to you feel and think.


  • All of the information you share with us is completely confidential and anonymous, it is used to create a collective analysis and your personal information will not be shared with anyone other than the Project Leader.
  • Encryption systems prevent the link between your registration details and your responses in a survey.
  • This programme is owned independently by EURORDIS and is a non-profit initiative; no commercial use of your details will be made at any time.
  • This programme is approved by the CNIL (Commission nationale de l'informatique et des libertés, French data protection authority).
  • The data is stored by Le Sphinx (a software company) in Grenoble, France, where they maintain a protected environment to ensure the secure storage of data. Le Sphinx is an online security platform with 24-hour surveillance and access control that has worked with many non-profit clients in the past.
  • Your answers are used for research purposes only. They will never be stored or used for purposes other than those indicated in the participation instructions.
  • You can unsubscribe at any time by clicking the unsubscribe link in the survey email. If you decide to unsubscribe from Rare Barometer your data will not be kept, it will be destroyed.
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Are you a patient organisation?

Please help us to find new participants for Rare Barometer in your organisation’s network. You can download an email template to encourage your members and their families to become part of this initiative.