Co-led by Professor Julian Barwell alongside Chris and Alex McQuade, the University Hospitals of Leicester, in partnership with the Fragile X Society, are establishing a national holistic and integrated care hub.
The hub is supported by initial pilot funding for dedicated genetic counsellor and allied health professional time, with plans to open in 2027.
To date the team have successfully appointed a genetic counsellor to support the service. Next steps are to develop a needs assessment review with input from teams including genetics, psychology, speech and language therapy, and occupational therapy.
Chris and Alex McQuade are parents of two boys with Fragile X syndrome and have been working together for a few years to raise awareness of Fragile X in the medical and wider community and think about how best to support similar families in the future.
Together with Professor Barwell and the Fragile X Society they have been forming ambitious plans to build the first Fragile X specific holistic and integrated clinic in the UK starting with an individualised care plan.
A central hub will help build and consolidate expertise, attract further funding to support the wider psychological and clinical needs of families, and create future research opportunities.
Professor Julian Barwell, Consultant Clinical Geneticist at University Hospitals of Leicester
The next step for the team is to reach out to families to understand the challenges they face, which will help shape the design of the hub.
Queries and expressions of interest in attending the hub can be sent to uhl-tr.GeneticsFragileX@nhs.net.
