On March 16, 2016 I made a call to participate in the surveys of the "Rare Barometer Voices" a project of Eurordis, the European Organisation for Rare Diseases (see link at bottom of this article).
Through the surveys Eurordis get a better understanding of the problem of rare diseases and may, on the basis of figures influence the European Commission.
The Rare Barometer Voices initiative aims to make the voice of rare disease patients stronger. The objective is to transform the opinions and experiences of rare disease patients into figures and facts that can be shared with a wider public.
Already more than 2900 responses are gathered for the survey on the impact of rare disease on daily life! The Rare Barometer team is still gathering responses from the impact on daily life survey until end of February. The goal is to reach 3000 participants.
The preliminary results of the survey are currently analyzed.
- Isolation from friends and family;
- Tensions between family members;
- Some members of the family were feeling neglected. This situation often happens between siblings, for example.
Eurordis will inform the European Commission of these issues at the end of February through a report.