an update from Caroline Pringle, Families and Professionals Advisor (Child Enquiries)
The Fragile X Society was invited to participate in the IGP rare disease research project being carried out across Europe. The research explores the experiences of families when sharing their diagnosis with other family members. Along with the Fragile X Society, organisations supporting other rare conditions and health care professionals were consulted as part of the study.
The objective of this research is to share solutions to improve practices across Europe, so that information is disclosed in a manner that enables families to be more supported. At this moment in time the first results are available, and we would like to share this information with you.
It is important to acknowledge that this information and future results raise awareness across the rare conditions community of the experiences and difficulties families face when receiving their diagnosis.
You can view the results by clicking through the images below.