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.
Participate in NORD Data and Research Training
The National Organization for Rare Disorders (NORD) offers a training toolkit From Records to Research: Making Sense of Health Data for Rare Diseases, which is a short, self-paced course that will help patients and caregivers understand what health data is and how it is used, how apps and devices track useful information, and how to ask questions and protect privacy. These modules are clear, engaging, and are designed for people with no medical background.
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 Science Director Sandra Ojeda for more information: [email protected]
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
Get involved with fundraising efforts to provide critical support for research projects and initiatives that help bring better understanding and better treatments. Plan your own event or join our annual Love Some1 with GLUT1 campaign.
Plan for Brain and Tissue Donation
Brain and tissue donation provides unprecedented research insights and can help bring peace, comfort, and hope to families during unimaginable grief and loss. Discussions and advance planning make the experience easier.
Sumary Notes from the Hemlock family's 2022 conference presentation on their tissue donation experience.