News

First Rare Barometer Voices survey on the impact of rare diseases on daily life

The survey is the first to be launched under Rare Barometer Voices EURORDIS initiative

September 15, 2016

EURORDIS, the European Organisation for Rare Diseases, has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease.

The Rare Barometer Programme has been created in the scope of the INNOVCare project to make the rare disease patient voice stronger by ensuring that the patient perspective is entrenched in the advocacy work of EURORDIS. Evidence-based policy equals more effective policy.

The study is divided into two stages and people who answer the first will also be invited to answer the second.

  • Stage 1: now opened - questions on care needs, access, costs and coordination.
  • Stage 2: Starting in October - questions on employment and school in relation to how rare diseases impact parents’or adult patients’ daily life.

The full survey report will be available in January 2017.

In order to answer this questionnaire, you only have to register for Rare Barometer Voices. Visit the Rare Barometer Voices website and read the EURORDIS press release with relevant information and the steps to follow. 

Participate and make your voice heard! 

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