A new national Fragile X Syndrome Hub has officially launched at Leicester Royal Infirmary, bringing together clinical expertise, family experience and support organisations to improve care for people affected by the condition.
The hub is the first of its kind in the UK and is being co-led by Consultant Clinical Geneticist Professor Julian Barwell and parents Chris and Alex McQuade.
We are particularly pleased that Vicki Kiesel, CEO of Genetic Experts, is helping to develop the hub, contributing to this important initiative and its ambition to provide more joined-up, holistic support for families.
The hub will bring together healthcare professionals, charities and other organisations to address the wider needs of individuals with Fragile X syndrome and their families. Alongside improving clinical and psychological support, it will also provide opportunities for research and the development of future treatments.
A key message behind the initiative is that support should not stop at diagnosis. Families need ongoing advice, understanding and access to services that recognise the impact of Fragile X across the whole family.
The launch marks an exciting step forward for the Fragile X community, and we look forward to seeing the hub develop and make a real difference to families across the UK.
Congratulations to everyone involved in bringing this important initiative to life!