Resource Collection

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We've put together an extensive list of resources to help you navigate so many aspects of living with this disease - medical, financial, advocacy, benefits, services, school, and more.

Some listed resources contain links to third party external sites where the GLUT1 Deficiency Foundation has no responsibility for content or oversight of privacy practices.

GLUT1 Deficiency Resources

Additional GLUT1 Deficiency Information

Genetic Testing Resources

​​Related Genetic Information
School Resources

Ketogenic Diet


Support Groups and Family Resources
Siblings
  • Sibling Support Presentation from Jess Kruger during a G1DF GLUT1 Gathering for parents and caregivers
  • SibNet(opens in new tab) a closed Facebook group for adult brothers and sisters of people with disabilities
  • Sibling Support Network the first national program dedicated to recognizing, promoting and addressing the life-long and ever-changing concerns of millions of siblings of people with developmental, health, and mental health concerns.
  • Sibling Leadership Network offers resources, information, support, and tools for siblings of individuals with developmental disabilities to advocate with their brothers and sisters
  • VIPSibling(opens in new tab) a resource focused on the experiences and and emotions of well siblings in rare epilepsy families

International GLUT1 Deficiency Parent Groups

Patient Advocacy Resources
  • Social Security Benefits
  • Easter Seals is a charitable organization that assists children and adults with disabilities and special needs.
  • The ADA is a federal civil rights law that forbids discrimination based on disability in certain situations. The act defines a disability as a physical or mental impairment that substantially limits one or more major life activities.​
  • Global Genes has a number of toolkits to help patients, parents, and caregiver navigate a number of challenges around rare diseases​
  • The Arc(opens in new tab) - promotes and protects the human rights of people with intellectual and developmental disabilities
  • Special Olympics(opens in new tab)​ - through the power of sports, people with intellectual disabilities discover new strengths and abilities, skills and success
  • Special Needs Alliance(opens in new tab) - nationwide attorney network providing services for special needs planning
  • Understanding the Importance of Shared Decisions(opens in new tab) highlights important considerations when deciding on treatments or therapies and the leading role patients and families should play
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Medical Travel Assistance
  • Patient AirLift Services (PALS)(opens in new tab) is an organization whose mission is to arrange free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.
  • Miracle Flights(opens in new tab) provides individuals and their families free flights to distant, specialized care, including valuable second opinions, follow-up visits, and clinical trials. They also fly people to retrieve/train service dogs.
  • Angel Flight NE coordinates free air and ground transportation for medically stable patients seeking medical care for healthcare conditions including rare and ultra-rare diseases that requires them to travel hundreds if not thousands of miles for the specialized care they need

Epilepsy Resources

Movement Disorder Resources

Other Medical Resources
  • Developmental Disabilities and Oral Health tips, information, and resources for caregivers and dental professionals to help better manage the oral health challenges for people with intellectual and developmental disabilities
  • Mejo is a web app that simplifies organizing, managing and sharing medical and care information for your loved ones
  • G1DF Research Ready Series Information
  • NORD Health Data and Research Training (English, Spanish)

Financial Assistance

Medication Assistance Programs

Hemlock Family Presentations
  • Gifting a Good Life: presentation notes from the 2022 GLUT1 Deficiency Foundation Family Conference with tips and strategies for planning for a full, happy life with your loved one
  • A Gift of Hope: Hemlock family presentation notes from the 2022 GLUT1 Deficiency Foundation Family Conference with thoughts on their tissue donation experience