A research team led by leading scholars including Professors Emily Farran, Gaia Scerif and more are inviting people living with Fragile X Syndrome aged 10 and over and their parents and/or carers to take part in a survey (also available in German, Spanish, Italian,

Dutch, Polish, Portuguese and Hindi). 

Results obtained from this survey will be analysed by the  team to understand how the FXS community wishes to be supported through future research and policymaking. This is a huge step forward in ensuring that researching FXS and other rare conditions is inclusive, holistic and meaningful to the community itself. FraXI strongly encourages all our members to share their valuable input. Together, we can change the way the world of research approaches topics which are important to all of us who live with FXS. 
Click هنا to access the survey.

This article has also been posted on “Research Opportunities” on our website.