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
- Donate whatever you can—every pound makes a difference.
- Share this campaign with your network
- Follow our journey as we build the Foundation together
Thank you for helping us turn hope into action.