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Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

2019-03-31
Make your voice heard: new Rare Barometer Voices survey on rare disease patients’ experience of treatments is now open!

The initiative will get an insight into which treatments and cures are available to people living with a rare disease, if they are accessible, and how they experience their treatment and cure. Survey is open until 30th April!

The new Rare Barometer Voices survey on rare disease patients' experience of treatments is now live!

This global survey is an EURORDIS-Rare Diseases Europe initiative open to anyone from any country in the world who is living with a rare disease, as well their family members and carers.

This survey will help EURORDIS to get an insight into which treatments and cures are available to people living with a rare disease if any, if they are accessible, and how they experience their treatment and cure. In addition, it will enable to measure rare disease patients unmet needs regarding treatments to communicate them to decision-makers while contributing to propose practical and implementable solutions to work towards the goal of accelerating the development of, and guaranteeing timely and access to all, rare disease therapies.

Online survey is available in 23 languages here. It should take no more than 10 minutes to complete and will be opened until 30th April. All responses are anonymous and will be kept in secure storage only accessible to the Rare Barometer research team.

You can find more information on this survey, and the Rare Barometer Voices initiative here.

Share your experience of rare disease treatments via the Rare Barometer Voices survey!