Press release FraXI April 2022
We are delighted to announce the official launch of Fragile X International (FraXI), a new organisation for families and healthcare professionals who live or work with Fragile X. FraXI’s vision is to help those living with Fragile X Syndrome (FXS), Fragile X Premutation Associated Conditions (FXPAC) and their families anywhere in the world enjoy a happy life.
FraXI is a conduit for countries to work together and an official entity for sharing of international knowledge and expertise. The establishment of FraXI is so important as there was a need for families and health professionals to have a place where they can go for advice, support and information. Furthermore, FraXI aims to drive research, encourage international collaborations and contribute with a unified voice of lived experience from the network of international countries that it comprises.
FraXI was founded by a network of 17 country family organisations from the European Fragile X Network. We very much welcome new members to join as either full members or associate members. Full membership is open to all fragile x family organisations around the world. Associate membership is available to corporations and non-family organisations. FraXI will work closely with all members to provide advice and support in setting up and maintaining country organisations and act as a conduit so that countries can share best practice with each other. This will involve proactive raising of awareness of FXS and FXPAC internationally; and promotion of social inclusion of FXS at all levels of society. FraXI will oversee communication of latest research and influence the direction of research internationally on FXS and FXPAC through work with our Board of Scientific and Clinical Advisors.
Quote from family member: “Knowing FraXI is there to contact about any questions I have about Fragile X is such a relief. Having a child with a rare condition can feel so isolating but with FraXI, I now feel a presence of support and sharing of knowledge that is working for the best outcomes for my child with Fragile X.”
Dr Kirsten Johnson, Chair of FraXI’s Board says: “FraXI will be a proactive organisation, with all countries working together to share best practices related to support and interventions to make a real impact in all aspects of the lives of people with FXS and Fragile X Premutation Associated Conditions (FXPAC).”
FraXI will open new avenues and pathways of support in the world of Fragile X for individuals with Fragile X, their families, their carers, researchers, and healthcare professionals.