The EURORDIS Rare Barometer Programme: what and why?

What?

Rare Barometer is a EURORDIS survey programme created to systematically collect patient opinions on transversal topics and include them in the policy and decision-making process. It is an interactive process through which participants can suggest survey topics. Results from the Programme’s surveys will be published publicly.  

Why?

Rare Barometer has been created to make the rare disease patient voice stronger by ensuring that the patient perspective is entrenched in the advocacy work of EURORDIS and its members. Evidence-based policy equals more effective policy.  EURORDIS’ strategic positioning at the heart of the policy and regulatory framework in Europe allows us to directly transform patient perspectives into policy and action.

The patient input collected through Rare Barometer will help rare disease patients to influence healthcare policies that affect them. It will allow policy and decision makers to be better informed with knowledge only patients and their advocates can bring to the discussion.

Where?

The EURORDIS Rare Barometer Programme covers the European continent (48 countries, as defined in the EURORDIS Membership Criteria, page 6 here).

How?

This unique programme creates an opportunity to collect patient experiences and expectations with validated methods in qualitative and quantitative data collection thanks to Rare Barometer Voices, the patient community responding to online surveys. Rare Barometer Voices includes respondents from the European continent (48 countries, as defined in the EURORDIS Membership Criteria, page 6 here).  Linking with rare disease online communities on RareConnect, patients will also be able to share their disease-specific experiences.

More specifically, Rare Barometer will help:

1. Inform legislation and policy on topics relevant to rare disease patients
2. Produce evidence on topics relevant to European legislation and policy
3. Promote and improve research on patients’ perspectives
4. Effectively communicate the opinions of rare disease patients on transversal topics
5. Minimise gaps in disease-specific knowledge via RareConnect polls.

Throughout the programme, EURORDIS respects the opinion, privacy and autonomy of survey participants.

Who?

The programme is guided by a Steering Committee at EURORDIS headed by the Rare Barometer Leader. This steering committee is supported by the strategic guidance and feedback of additional advisory committees. For each survey, a topic expert committee will be established. The program will rely heavily on strong patient participation through EURORDIS member organisations and online RareConnect patient communities.