Help Us Launch the Xia-Gibbs Syndrome UK Foundation

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We are raising £5,000 to officially register and launch the Xia-Gibbs Syndrome UK Foundation—a new UK-based charity dedicated to supporting children and families affected by this rare genetic condition.

Why now?

Our daughter Dominique was diagnosed with Xia-Gibbs Syndrome—a rare neurodevelopmental disorder caused by changes to the AHDC1 gene. Like many families, we faced a difficult road to diagnosis and even fewer resources once we got there. In the UK, no official charity exists to support families navigating Xia-Gibbs.

That’s about to change.

Inspired by the work of other international families & Charities, we are taking the leap and founding the first UK charity dedicated to Xia-Gibbs Syndrome. With your help, we can provide:

Practical guidance for newly diagnosed families
Access to emotional and peer support
Advocacy in medical, education and government spaces
A growing community for rare-disease families who often feel isolated

What will the funds be used for?

This first round of fundraising will help us lay a strong foundation. Your donation will go directly toward:

Official registration costs with various governing bodies
Legal and professional advice to ensure compliance and sustainability
Website hosting and design for community outreach
Flyers, educational materials, and awareness campaigns
Tools to support inclusive digital content and accessibility

Why this matters

There are fewer than 600 children in the world diagnosed with Xia-Gibbs Syndrome, and many more still undiagnosed. Early intervention, access to therapy, and connection to other families can make a profound difference.

This isn’t just a fundraiser. It’s the first step toward building a lifeline for families like ours across the UK and beyond.

How you can help