Join the TUF Family Network | The UGDH Foundation

Join the TUF Family Network.

The TUF Family Network is for the immediate families of patients diagnosed with a developmental and epileptic encephalopathy that may result from UGDH variants. Members will hear directly about opportunities to participate in research and

share their voice.

Every member matters. The bigger our network is, the better we will understand who is affected across the world and how, which is critical to tailoring our efforts to find better treatments for everyone with Jamuar syndrome.

Your contact information will not be shared outside our organization without express consent in accordance with our privacy policy.

First name of parent or guardian

Last name of parent or guardian

First name of son or daughter diagnosed with Jamuar syndrome

Last name of son or daughter diagnosed with Jamuar syndrome

Birthday of son or daughter diagnosed with Jamuar syndrome required

City, state, country of residence

Preferred language

Name(s) of UGDH variant(s), if known. These can be found on your child's diagnostic report.

Is there anything else you'd like to tell us?

If you selected Text or Phone, please provide a phone number.

If you selected Postal mail, please provide a mailing address.

Thank you for enrolling! You'll be hearing from us soon. You can also contact us at contact@ugdh.org.

Check your Spam/Junk folder if you don't receive anything from us soon.

Join the TUF Family Network.

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