The Glut1 Deficiency Foundation is creating a network of patients, families, and professionals who have a connection to the Glut1 Deficiency community. The purpose of these networks is to better connect, educate, support, and empower our community as we work together for better understanding, better treatments, and a better quality of life for all people who have Glut1 Deficiency and for those who love and care for them.

The Family Network is open to any patient or family member, while the Professional Network has been created for researchers, clinicians, and other healthcare providers.  The Glut1 Deficiency Foundation will use these networks to communicate important udpates, conduct surveys, gather feedback, and continue to look for a variety of other ways to collaboratively engage stakeholders in our efforts to better serve our community and drive research progress.  

Family Network membership will help us with these important goals:
  • Have a more accurate count of how many people are diagnosed and affected
  • Learn the range of patient ages and have a more accurate idea of how many are children and how many are adults
  • Know where people with Glut1 Deficiency live to help us choose locations for our biennial conferences
  • Know where there are pockets of families to help plan regional educational and support efforts
  • Better connect with international Glut1 Deficiency families and their patient advocacy organizations
  • Better connect interested families and patients to others based on similar locations, ages, or centers of care
  • Better understand the diverse experiences, needs, and priorities in our community
  • Better organize and engage our community in our mission efforts
  • Work more collaboratively to bring help and hope to our patients and their loved ones

Professional Network membership will help us answer these important questions:
  • Who and where are the healthcare professionals treating Glut1 Deficiency patients?
  • What services are they providing?
  • How many patients do they have in their care?
  • Who is doing research related to Glut1 Deficiency?
  • What kind of research is being done?
  • Where is this research happening?
  • How can we take what is being learned in research and translate it to better patient care?
  • How can we take what is being learned in clinic and translate it to better and more focused research?
  • How can we better connect these professionals?
  • What are their needs and priorities?
  • How can we help improve, coordinate, and support their work?​​

Additional Network Details:
  • We welcome and encourage global participation.  
  • The G1DF respects and values your privacy and will not share any personally identifiable information without your express permission.  
  • De-identified, aggregate data may be used to share statistics about the patient community such as age ranges, how many people are diagnosed, and the geographic distribution of patients.
  • Your information will be stored securely and no one outside the Glut1 Deficiency Foundation will have access to it, and you may submit a request in witing to the G1DF to have it removed at any time.
  • Family Network members will receive invitations to join our Glut1 Community Connect forum - a place to meet, share, and learn by asking and answering questions, giving and getting support, and sharing ideas and experiences.  It is hosted on the Discourse platform and is a safe, secure, and private space to gather.
  • ​Professional Network members who are researchers and clinicians will have the opportunity to join the separate Professional Glut1 Community Connect forum when it launches in the summer of 2021.  It will provide a safe and secure space to discuss research findings, propose ideas, and consult with one another on patient cases.
Network members will also be eligible for early access to event registrations and special members-only discounts to our conferences and our online store.

​There are no fees or costs associated with being a member of either the Family Network or the Professional Network.
You may already be on our mailing list, but the Family Network and the Professional Network are separate initiatives and will require a separate registration.  Please sign up today and join the G1DF as we work to bring help and hope to the Glut1 Deficiency community!

Global participation is welcomed and encouraged!

Glut1 Community Connect is a closed, private, invitation-only forum for members of the Family Network.
​ Plans are underway to launch a similar platform for the Professional Network in Summer 2021.