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The UGDH Foundation

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

VISION

No disease-specific treatment exists for Jamuar syndrome.

 

We’re here to change that. 

Jamuar syndrome is a newly discovered ultra-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. 

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COLLABORATION

We are building a network of patient families, medical researchers, and financial donors.

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.  

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SCIENTIFIC ADVISORY BOARD

The foundation's Scientific Advisory Board is made of genetic researchers, clinicians, and counselors who all have first-hand experience working with patients affected by Jamuar syndrome.

JOIN US

Our foundation exists to facilitate collaboration, and we are actively seeking volunteers to help.

 

 Are you 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!

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FUND OUR RESEARCH

You can further the work of the UGDH Foundation by contributing financially to our work.

Donations are tax-deductible for contributing organizations and individuals in the United States.

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The UGDH Foundation In Numbers

<70

KNOWN PATIENTS

5

DIRECTORS

3

SCIENTIFIC ADVISORY BOARD MEMBERS

$25k

FIRST YEAR FUNDRAISING GOAL

Partner Organizations

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COMBINED BRAIN

CONSORTIUM

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FOUNDATION GROUP

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GLOBAL GENES

GLOBAL ADVOCACY ALLIANCE

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