What We Do
To hasten better treatments and a cure, The UGDH Foundation is building the global patient family network, promoting relevant research, and funding compelling research grants and tools.
TUF FAMILY NETWORK
Yes, Mom & Dad, you can drive research for better treatments!
Parents and guardians of loved ones with Jamuar syndrome join our network to be the first to know about research opportunities, clinical care news, and other ways to make a difference. In fact, multiple opportunities exist right now to participate in research!
PROMOTING RESEARCH
The UGDH Family & Scientific Meeting 2026
World class clinicians and scientists as well as dedicated family and friends of patients with Jamuar syndrome converge for presentations on clinical features, genetics, promising therapeutic approaches, the latest research, and more!
PROMOTING RESEARCH
COMBINEDBrain Biorepository
We are developing UGDH-specific materials for the COMBINEDBrain biorepository. Samples can be collected in the U.S. or transferred from around the world. Researchers who would like to donate relevant samples can contact us to begin the process.
GRANTMAKING
Seed Grant Program
We welcome letters of interest for compelling research projects that
1) Test therapeutic approaches
2) Develop disease models to illuminate therapeutic targets and biomarkers
3) Increase understanding of the natural history and genotype-phenotype correlation of Jamuar syndrome/UGDH-related disorder
