help shape the future of the Glut1 Deficiency Foundation by ensuring
our programs are focused on patient needs and our priorities are patient-led


The Glut1 Deficiency Foundation (G1DF) is a nonprofit patient advocacy organization dedicated to improving lives in the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.


The G1DF was founded officially in 2011 and is parent-led in all aspects of its leadership and governance. Like most rare disease organizations, it grew out of grassroots efforts to create a representative way to help address the many challenges patients and families face with diagnosis, finding support and information, lack of knowledge and awareness in the medical community, options for disease management, and the lack of funding and collaboration for much-needed research.

Also, like most small rare disease organizations, the majority of the support for our activities comes from the community we serve. We want to ensure we are good stewards of those entrusted resources and invest them in ways that are needed and matter most.


As part of our strategic planning process to helps ensure impact and sustainability, the G1DF is seeking community feedback and input to help understand engagement patterns and perceptions and identify needs so that the G1DF can provide the most benefit to the community in the most valuable, effective, and efficient ways.


We have created two different online surveys - one for families and one for professionals - to help capture individual insights, priorities, and ideas:

  • the surveys are anonymous
  • the surveys are on the Qualtrics platform
  • the family survey takes approximately 10-15 minutes to complete
  • the professional survey takes approximately 5-10 minutes to complete
  • find links to the surveys at the buttons below
  • please reach out to [email protected] if you have questions

We greatly appreciate your time in taking our community engagement survey and lending your voice so that we can better serve the Glut1 Deficiency community. We value each person in the community and each response.


Family Survey

This survey is best suited for patients, parents and caregivers, siblings, and extended family members who have a loved one with Glut1 Deficiency.

Professional Survey

This survey option is best suited for professional members of our community, such as clinicians, dietitians, medical professionals, scientists, researchers, industry, etc.