Xia-Gibbs Syndrome | UK Foundation

a family-led charity supporting families affected by this rare genetic condition.

Who We Are

We are a UK-based charity, led by families and built for families. Our aim is to support children living with Xia-Gibbs Syndrome, along with the people who care for them, by offering connection, clear information and a strong voice for advocacy.

Support for Families

We provide peer support, straightforward guidance and calm encouragement at every stage of the journey. Whether you’re trying to make sense of the system or simply need someone who understands, we’re here to help.

Understand First

We explain Xia-Gibbs Syndrome in clear, compassionate language that’s easy to understand, especially when everything feels overwhelming.

Built by Families

Our charity is run by parents and carers with lived experience. We understand this journey from the inside out.

Medical Professionals

We work closely with clinicians, therapists and specialists across the UK and internationally who have experience supporting children with Xia-Gibbs Syndrome.

Support our Work

Your donations support families directly helping fund private therapies, home support, and access to intensive rehabilitation abroad. Every contribution makes a difference.