塑造研究，改變生活：您的聲音很重要！
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.
We will keep this survey live until October 15th.
按一下 這裡 以存取調查問卷。
