We exist to bring relief to families affected by Jamuar Syndrome through scientific collaboration for better treatments and a cure.


Are you are a parent or guardian of someone with a UGDH-related disorder? This message is for you. 

What is Jamuar Syndrome?

Jamuar Syndrome is a newly discovered rare genetic disorder caused by variants in the UGDH gene. This disorder affects the neurological system and can cause developmental delay, low muscle tone, loss of motor skills, speech impairment, moderate to severe intellectual disability, and seizures. 

No disease-specific treatment exists for this disorder. We’re here to change that. 

Who We Are

The UGDH Foundation is a tax-exempt, nonprofit organization incorporated in West Virginia, United States. Our board of directors includes parents of children diagnosed with Jamuar Syndrome and individuals with full-time nonprofit experience.  

Join Us

If you are a parent of someone diagnosed with Jamuar Syndrome, you’re not alone. We can put you in touch with a patient family network and talk about how we can accelerate research together. 

If you are a medical or scientific professional interested in UGDH-related disorders or volunteering on our Scientific Advisory Board, we’d love to hear from you!

Whatever your background may be, we would love to keep you updated on our work. Please get in touch with us below.

Partner Organizations

The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders is a nonprofit organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders by pooling efforts, studies, and data.

Foundation Group provides expertise in 501(c)(3) nonprofit formation, bookkeeping, plus state and federal tax and compliance filings to help nonprofit leaders make better decisions, reduce risk, and grow their organizations.

The Global Advocacy Alliance is a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare diseases by collaborating to realize positive change.

The UGDH Foundation

P.O. Box 670
Shepherdstown, WV 25443

The UGDH Foundation is a public charity, exempt from federal income tax as an organization, described in Section 501(c)(3) of the Internal Revenue Code. All contributions to the organization are tax-deductible to the fullest extent of the law.