Glut1 Deficiency Foundation
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    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
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      • 2017 Conference - Nashville
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        • 2013 Houston Conference Webcasts
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    • Stories >
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      • Katie
      • Tessa
      • Justin
      • Whitney
      • Ryan
      • Erik
      • Pattygrace
      • Chris
      • Sam
      • Collette
      • Phil
      • Joshua
      • DeAndre
      • Matt
      • Jayden
      • Brittany
      • Macie
      • Braden
      • Dalton
      • Jordan
      • Joelle
      • Sabrina
      • Thomas
      • Haley
      • Reed
      • Ben
      • Parys
      • Ronnie-Louise
      • Colin
      • Nathan
      • Lee
      • Dominic
      • Raina
      • Dylan
      • Brayden
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      • Addie
      • Drake
    • Share Your Story
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      • 2018 Love Some1
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      • Fundraising Help
  • Contact Us

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.
In the world of rare diseases, Glut1 Deficiency patients can be counted as fortunate.  Health issues and struggles certainly exist, but G1D 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.
​
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.
  • Educational Brochure (English, Spanish, Portuguese)
  • Power Point on Glut1 Deficiency and the G1D Foundation
  • Glut1 Deficiency FAQ
  • Glut1 Deficiency Foundation Conference Summaries
  • Educational Video Project
  • Family Stories
  • Sample School Letter
  • Cognition and Learning
  • Triheptanoin FAQ
  • Family Recommended Specialists
  • Glut1 Deficiency Patient Registry
  • Related Links
  • Professional Guide
  • Diagnostic Protocol
  • Genetics Home Reference
  • Gene Review
Glut1DS Yahoo Group International Glut1 Transporter Deficiency Syndrome Support Group
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

If you sign up for our mailing list, you'll receive a welcome packet of resources and information for newly diagnosed families.  

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

​​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 © 2018 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Brochures
    • Professional Guide
    • Newly Diagnosed
    • Educational Video Project
    • Resources
    • Cognition and Learning
    • Related Links
    • Research News
    • Recent Publications
    • Patient Registry
    • Videos
    • Materiales en Español
    • Family Recommended Specialists >
      • Recommend a Specialist
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
    • Research Grant Program
  • News
    • Recent News
    • Foundation Newsletters >
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences
    • Conferences
    • 2019 Conference - Washington, DC
    • Past Conferences >
      • 2017 Conference - Nashville
      • 2015 conference – Orlando
      • 2013 Conference – Houston >
        • 2013 Houston Conference Webcasts
      • 2012 Conference – Indianapolis
      • Conference Summary Reports
  • Stories
    • Stories >
      • Emily
      • Bobby
      • Lilly
      • Allison
      • Katie
      • Tessa
      • Justin
      • Whitney
      • Ryan
      • Erik
      • Pattygrace
      • Chris
      • Sam
      • Collette
      • Phil
      • Joshua
      • DeAndre
      • Matt
      • Jayden
      • Brittany
      • Macie
      • Braden
      • Dalton
      • Jordan
      • Joelle
      • Sabrina
      • Thomas
      • Haley
      • Reed
      • Ben
      • Parys
      • Ronnie-Louise
      • Colin
      • Nathan
      • Lee
      • Dominic
      • Raina
      • Dylan
      • Brayden
      • Elli
      • Jacob
      • Rian
      • Hailey
      • Olivia
      • Addie
      • Drake
    • Share Your Story
  • Get Involved
    • Ways to Give
    • Shop to Support
    • Donate
    • Sign Up for Our Mailing List
    • Love Some1 with Glut1 >
      • 2018 Love Some1
    • Fundraising >
      • Fundraising Help
  • Contact Us
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