New survey on rare disease research

Ahead of Rare Disease Day, EURORDIS has recently launched a new Rare Barometer Voices short survey on the 2018 theme of research. The survey is available in 23 languages. The survey only takes around 5 minutes to complete! You can participate in two different ways by 26 October:

1. Please spread the word about the survey throughout your network by sharing this link to the survey: ow.ly/jDu330eFt7B or the link to this press release. 

The results for your country or disease will be made available to you upon request (please contact: rare.barometer@eurordis.org) to use when advocating for more rare disease research.

2. You can also participate as a patient representative! By doing so, you will help us to identify priorities in the field of rare disease research: ow.ly/jDu330eFt7B.

Rare Barometer Voices is also now global - participants from all over the world can now participate in the survey and answer in one of the 23 languages available.


We believe that the results from this survey can really make a difference in voicing the needs of people in the rare disease community in this area.

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