Glut1 Deficiency Foundation
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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 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.
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We have compiled a list of resources below we hope will be most helpful to you as you begin this journey. Also, please explore the website for more information on Glut1 Deficiency, especially under the Resources section.
  • What is Glut1 Deficiency? - Osmosis.org Video
  • Guide to Understanding Glut1 Deficiency
  • Expert Consensus Guidelines
  • Key Terms in Glut1 Deficiency​
  • Ketogenic Diet Information and Resources
  • Glut1 Deficiency Foundation Conference Summaries
  • Educational Video Project
  • Family Stories
  • Sample School Letter
  • Cognition and Learning
  • Family Recommended Specialists
  • Glut1 Deficiency Patient Registry
  • Genetics Home Reference
  • Gene Review
  • Research News
Glut1 Community Connect private discussion forum on the Discourse platform
           *must be a member of the Family Network to participate in Glut1 Community Connect
Glut1 DS Care and Support international closed Facebook group
Rare Diseases Online Community – Glut1 DS  in German, English, French, Spanish, and Italian
Charlie Foundation ketogenic diet resources
Matthew's Friends aid and support in managing the ketogenic diet
Keto Hope Foundation family support and education

Sign up for our Family Network to receive a welcome packet of resources and information for newly diagnosed families.  You'll also receive an invitation to join Glut1 Community Connect - a closed, private forum on the Discourse platform.

Additional Resources

Join OUr Networks

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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Contact Us

​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research Compass
      • Research News
    • Patient Registry
    • Resources >
      • Resource List
      • Videos
      • The Patient Voice
      • Cognition and Learning
      • Family Recommended Specialists
      • COVID-19
      • Patient Stories >
        • Family Stories >
          • Share Your Story
      • Materiales en Español
      • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • Glimpses | The G1DF Blog
    • Foundation Newsletters >
      • Summer 2022
      • Spring 2022
      • Winter 2022
      • Fall 2021
      • Summer 2021
      • Spring 2021
      • Winter 2021
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • 2022 Scientific and Family Conference
    • Conferences and Events
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2022 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate