Eurordis Rare Barometer Voices Survey on Rare Disease patients and COVID-19

How has the COVID-19 pandemic affected the lives of rare disease patients? The latest Eurordis’ Rare Barometer Voices survey aims to answer this very question by collecting rare disease patients’ experience of COVID-19.

“The goal is to voice the specific needs of rare disease patients’ in relation to the COVID-19 pandemic and to propose practical solutions to ensure rare diseases patients are taken into account when handling the pandemic.”

The Rare Barometer Voices is a tool that surveys people living in Europe with a rare disease in order to understand their perspective and opinions on a variety of subjects that concern them.

This survey is open to all rare disease patients, family members and carers around the world and is available in 23 languages.

To participate in this survey follow the link here

To learn ore about the survey, click here