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Xia-Gibbs Society organizes regular Family Conferences, bringing together our Xia-Gibbs Syndrome community with researchers, clinicians, therapists and the Society Board. The experience for participants is often life-changing, as they are able for the first time to meet and speak with others living with this very rare condition.

On the weekend of May 18th and 19th 2024 we held our highly anticipated Family Conference in Houston, TX.  Over 30 families attended in person, and the conference was livestreamed online to a global audience, providing access to the XGS community worldwide.

  • Top scientists, researchers, and families affected by XGS gathered to share groundbreaking discoveries and chart the future of research into Xia-Gibbs Syndrome.
  • Prominent figures from the scientific community, including Prof. Richard Gibbs and Dr. Jianhong Hu from the Baylor College of Medicine Human Genome Sequencing Center, and Dr. Anthony Oro of Stanford University, joined our XGS community at the event.
  • Together with the Society’s board they explored how collaborative efforts can propel research and improve the lives of those affected by this rare condition.
  • For many attendees the conference also marked a once-in-a-lifetime opportunity to meet others sharing the experience of living with Xia-Gibbs Syndrome. Many families described it as a life-changing experience, especially given the isolation of living with such a rare disease.


Click for Speaker bios and presentations.

In March 2020 we held our third Family Conference in the US, this time in Orlando, Florida. While in-person attendance was impacted by the rapidly-developing COVID-19 pandemic, 10 families traveled and met in person and were able to hear presentations via video link from Dr Gibbs and others.

  • Dr Richard Gibbs provided an update on research initiatives into XGS at Baylor College of Medicine Human Genome Center.
  • The Society Board shared the successful fundraising results of Awareness Week and announced plans for the first Xia-Gibbs Society Research Grant.
  • The conference was live-streamed on social media, meaning for the first time our global community could take part in the meetings wherever they were.

In May 2018 we met in Houston, Texas again for our second Family Conference in the USA. 10 families gathered to hear from members of the BCM research team and Texas Children’s Hospital clinical team, including Dr Richard Gibbs and Dr Michael Wangler.

  • Dr Gibbs and his team gave us an update on in-progress research into Xia-Gibbs Syndrome.
  • Dr Wangler and Dr Yun Yun Jiang shared a summary of their recently-published phenotype study, derived from the Patient Registry data.
  • The conference was live-streamed on social media, meaning for the first time our global community could take part in the meetings wherever they were.

In August 2017 we held our first European Family Conference in Brussels, Belgium. Dr Richard Gibbs and Emily Wilkinson (Society President) traveled to meet with [15] families of persons with Xia-Gibbs Syndrome who gathered from across Continental Europe.

  • Outside of the USA, Netherlands is the country with the highest number of XGS diagnoses.
  • European persons with XGS have since contributed to the Patient Registry.
  • This meeting was key to our mission to represent our global XGS community, no matter where they are located.

In May 2017 we held the first Xia-Gibbs Syndrome Family Conference, in Houston, Texas, USA. 15 families of persons with Xia-Gibbs Syndrome attended, as well as researchers and clinicians from Baylor College of Medicine and Texas Children’s Hospital, including Dr Fan Xia and Dr Richard Gibbs.

  • This first meeting led to the formation of the Xia-Gibbs Society Board shortly afterwards.
  • Biological samples taken at the meeting were used by the BCM researchers to create the Xia-Gibbs Syndrome Patient Registry.
  • For the families, it was a life-changing experience to meet others who shared their experience of living with this extremely rare syndrome.

Xia-Gibbs Society aims to award multiple annual research grants to support research into Xia-Gibbs Syndrome.

The Xia-Gibbs Society Research Grant Award is available to both established and early career investigators with a strong interest in XGS.

Xia-Gibbs Society Research Priority Areas:

  • Furthering the basic understanding of AHDC1 function and expression.
  • Gaining a more in-depth understanding of the varying clinical phenotypes and clinical presentations of those with XGS.
  • Advancing insight into therapeutic interventions, such as the development of novel treatments, evaluation of the efficacy of pharmacological and behavioral treatments, exploration of genetic approaches, and the identification of objective outcome markers for treatment.
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