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If your family member has recently been diagnosed with Xia-Gibbs Syndrome (“XGS”), you are probably feeling overwhelmed, perhaps scared, perhaps relieved to finally have an answer. It may have taken a long time to receive a diagnosis. You might also be wondering:  What is XGS? What is a genetic mutation? How did this happen?

While we hope the information on this website will help you better understand the genetic basis of XGS, it should not replace a consultation with a genetic counsellor or your genetics health care provider. It is important to seek advice from these professionals if you haven’t already.


Now you are here, we want to welcome you to our community! This website is the public face of our Xia-Gibbs Syndrome community, and our charitable organization, Xia-Gibbs Society.

If you would like to be more involved in the work of Xia-Gibbs Society, you can do so as a volunteer, by raising funds, or by attracting corporate sponsorship for our family conferences.


Our global community gathers in private discussion groups on social media. In the groups, you will find many people like you who are caring for loved ones with Xia-Gibbs Syndrome and will be able to talk to them, share and ask questions. To request access to those groups, please fill out our contact form and be prepared to answer some basic questions about your family member and their diagnosis.


If you would like to know more about Xia-Gibbs Syndrome, you will find information here on the website summarizing what we know so far about the syndrome and its effects on those living with it.

There is some basic information here about the genetic basis for the syndrome, and a glossary of terms that might help understand some of the medical and scientific language used to talk about it.


If you would like to know about the current state of research into the syndrome, you can find that here.

To contribute directly to research, please consider joining the patient registry – the data in the registry is crucial for researchers trying to understand more about the syndrome and its effects.

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