family stories

Share Your Story


Reading about the experiences of patients and families in the Glut1 Deficiency community is a very powerful and effective way to connect us all and to better understand the challenges around getting a diagnosis and what a difference that can make. We are grateful you want to be part of this important program.

When writing your story, you may want to make sure to touch on these areas:

  • Past: Path to diagnosis and age.
  • Present: What changes have come because of the diagnosis.
  • Future: What questions, concerns, and hope do you have for what lies ahead.

Submit Your Story

Please also upload a photo of your loved one with Glut1 Deficiency and one of your family if you would like to include it.

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