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Shape Research, Change Lives: your voice matters!

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 یہاں to access the survey.

ایک FraXI منظور شدہ مطالعہ

Please see below information from Adam Whalley, a student doing a Doctorate in Clinical Psychology at the University of Lincoln, UK. He has asked FraXI to advertise his research and invite people to complete his questionnaire. He has completed our FraXI research Protocol and his proposal has been approved by our Research Committee.

والدین کا مقابلہ کرنے پر ایک مقالہ – ایک آن لائن سوالنامہ

میرا نام ایڈم وہلی ہے، میں اپنے ڈاکٹریٹ کے مقالے کے پروجیکٹ کے لیے شرکاء کو بھرتی کر رہا ہوں جس میں ایک ذہنی معذوری والے بچے کے ساتھ والدین میں والدین کا مقابلہ کرنا ہے۔ یہ کلینیکل سائیکالوجی (DclinPsy) میں میری ڈاکٹریٹ کے لیے ہے۔ آپ کی شرکت قابل قدر ہونی چاہیے۔ 30 منٹ اور مکمل طور پر رضاکارانہ ہے. آپ کو چار میں سے ایک جیتنے کے لیے ڈرا میں شامل کیا جائے گا۔ £25 ایمیزون واؤچرز