Eurordis - Rare Disease Europe

Rare disease patients, family members and patient representatives worldwide can now register for Rare Barometer Voices, a new interactive survey panel available in 23 languages, which collects the experiences of people that are living with or affected by a rare disease. Register at www.eurordis.org/voices.

Rare Barometer Voices seeks to make the voice of rare disease patients stronger and ensure it is heard across Europe and also internationally.

All rare disease patients, family members and patient representatives wherever they live in the world are invited to register, whether or not they belong to a EURORDIS member organisation.

How does it work?

After registration, participants will be sent an email to request their participation in each new survey related to specific subjects that concern them. All participants are free to decide which surveys they wish to participate in and all responses are anonymous, completely confidential, owned by EURORDIS and not used for commercial purposes.

Survey results will be sorted by country and ultimately disease, and will be also available to survey respondents.

Spread the word!

Support for Rare Barometer Voices from the rare disease community is essential to ensure the quality of the results. By letting members of your organisation know about Rare Barometer Voices you can help to make the voice of the rare disease community stronger:

• Share the dedicated webpage (eurordis.org/voices) on social media using #RareBarometer

• Download a template email to encourage people to register (available in 23 languages: EN, BG, CS, DA, DE, EL, ES, ET, FI, FR, HR, HU, IT, LT, LV, NL, PL, PT, RO, RU, SK, SL, SV)

• If you would like to receive a Facebook post announcing the launch of Rare Barometer Voices in any of those languages, please email rare.barometer@eurordis.org

• Download the Rare Barometer Voices logo

How does Rare Barometer Voices feed the advocacy work of the rare disease community?

By collecting the opinions of rare disease patients across the world through Rare Barometer Voices, they can be presented to policy and decision makers, patient organisations and the general public. Survey results can be used to raise awareness and influence policy that directly affects those living with or affected by a rare disease.

Rare Barometer Voices is part of the wider EURORDIS initiative, the Rare Barometer Programme.

The Rare Barometer Programme 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.

The Programme will help to:

• Produce evidence on topics relevant to European and International legislation and policy

• Inform legislation and policy on topics relevant to rare disease patients

• Promote and improve research on patients’ perspectives

• Effectively communicate the opinions of rare disease patients on transversal topics and minimise gaps in disease-specific knowledge via RareConnect polls.

If you have any questions regarding Rare Barometer Voices please contact Sandra Courbier, Rare Barometer Leader: rare.barometer@eurordis.org.

Foundations, research centres and corporate funders are an important part of Rare Barometer Voice’s success. To learn how private sector funders can get involved contact Jill Bonjean, Resource Development Director: jill.bonjean@eurordis.org.

Eva Bearryman, Junior Communications Manager, EURORDIS