Participate in Research


There are many ways that YOU can play a role in advancing research to help lead to better understanding, better treatments, and one day a cure.

Participate in the Research Ready Series

Learn about patient-centered outcomes research and take part in research fundamentals training to be able to better understand and participate in the research process and help ensure that research is focused on things that matter most to patients and families.

Enroll in the Glut1 Deficiency Natural History Study

Help contribute data about patient experiences so that we better understand how this disease impacts people in different ways, how that may change over time, and how it can be better and more easily diagnosed and treated.

Donate samples to the Glut1 Deficiency Biorepository

Researchers learn the most when they have cells and other biosamples to study from actual patients. You can easily donate blood and other samples from you and your loved ones to help make these important tools available to the research community.

Contact Biorepository Director Katie Staudt for more information: [email protected]

Sumary Notes from the Hemlock family's 2022 conference presentation on their tissue donation experience.

Participate in a Clinical Trial or Study

Find information about current studies to learn more about Glut1 Deficiency and clinical trials to measure the safety and effectiveness of potential new treatments that are being developed.

Fund Glut1 Deficiency Research through Team Glut1

Donations are doubled thanks to this unique opportunity to fund rare disease research through Team Glut1 and Penn Medicine’s Orphan Disease Center.