Newly diagnosed

A diagnosis helps answer many questions, but it also creates many more. As overwhelmed and anxious as families feel with the news of a rare, genetic, and serious medical condition, a proper diagnosis is a turning point and an important and positive step in the right direction… the end of one journey and the beginning of another.

Having a name helps provide the focus and direction needed to begin to understand what you and your family are facing so that you can learn how to help and support your loved one with Glut1 in the best ways possible. It also gives you a new family of fellow parents and patients to help you on the journey.

In the world of rare diseases, Glut1 Deficiency patients can be counted as fortunate. Health issues and struggles certainly exist, but Glut1 Deficiency is neither terminal nor progressive, and there is great hope for improvement in symptoms for most patients with a ketogenic diet. Glut1 Deficiency patients are generally a delight to all who know them and are cheerful, friendly, social, and positively perseverant in overcoming challenges. Additionally, the Glut1 Deficiency worldwide community has a dedicated team of experts and researchers working every day to help develop better and more effective treatments and improve the quality of life for patients and families. Hope abounds.


Glut1 DS Care and Support
International Closed Facebook Group 

Matthew’s Friends
Aid and support in managing the Ketogenic Diet

Charlie Foundation
Ketogenic Diet Resources