Contact 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.


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.