Rare Barometer is a survey programme run by EURORDIS – Rare Diseases Europe that collects the experiences, opinions and needs of people living with rare diseases and their family members.
Its main purpose is to make the voices of the rare disease community heard and use these experiences to influence healthcare policies, research and patient support services.
Rare Barometer combines individual experiences into evidence that can demonstrate shared problems and help decision-makers understand what patients and families actually need.
Rare Barometer is a way of turning the lived experiences of people affected by rare diseases into evidence that can help improve healthcare, research and public policy.
Rare Barometer in Ireland
When there are enough Irish responses, results are analysed by the Rare Barometer team to answer questions in the Irish context.
The analyses of Irish responses are shared with Rare Diseases Ireland. This gives us insight into what is happening in Ireland and how we compare to the wider European context.
PLEASE sign up to hear about future surveys!
See below for Irish Rare Barometer Results.
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