Be the Voice of Change: Take the new Rare Barometer Survey

FraXI is excited to announce that EURORDIS now invites our members to take part in the new Rare Barometer survey (available in 25 languages, worldwide, to all people living with a rare or undiagnosed condition and to their family members). The survey takes about 25 minutes to fill and will stop accepting responses on November 16th.

We encourage all families and people living with FXS to participate. We will be given the FXS results, which can be differentiated by country if there are enough responses from any one country. 

Past Rare Barometer Surveys have proven to be crucial stepping stones in our journey to create more inclusive and equitable spaces for people living with FXS in research and policy development. This is entirely due to data being collected directly from people with lived experiences of FXS. Now that the survey is back, you will have the opportunity to talk about how you cope with daily stress, which support you can rely on and how you wish to be supported, or how you and your family manage to learn, work, and contribute to your community while living with FXS.

The results will help advocate for tailored solutions for people with rare or undiagnosed conditions and their families to live life to engage meaningfully in their daily activities. Survey results will be shared with participants, patient organisations, decision-makers and the general public.

Please help – take the survey aquí!