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
  • GeneDX whole exome sequencing program for epilepsy
  • Genome Medical genetic testing program with virtual support
  • low cost genetic testing clinical diagnostic testing services
  • ​Rare Genomes Project research study to determine causes of genetic diseases.  This is an ideal program for suspected GLUT1 Deficiency patients where mutations in the SLC2A1 gene have not been found in previous genetic testing
  • Probably Genetic offers free, at-home genetic testing for more than 4,000 rare diseases
  • Project Find Out facilitates early and accurate genetic diagnosis of rare neurodevelopmental disorders in infants between 3-12 months. VIDEO

​​Related Genetic Information
School Resources

Ketogenic Diet

Support Groups and Family Resources
  • GLUT1 Community Connect private Facebook group from the Glut1 Deficiency Foundation for members of the Family Network
  • Parent Partner Peer Support Project to provide individualized support, understanding, and encouragement from other parents on this journey
  • GLUT1 en Español private Facebook group in Spanish
  • GLUT1mom.com  Spanish blog from GLUT1 parent Vivian Mathis
  • DEE-P Connections resources and support for families living with developmental epileptic encephalopathies
  • A Mother's Rest makes recuperative rest and respite available and affordable for parents and caregivers who have loved one with extra challenges
  • Caregiver Connect is a series of modules created and kindly shared from the Dravet Syndrome Foundation. It is a unique program with a focus on helping families manage the caregiver burden and stress that accompany caring for a child with complex lifelong medical needs.
Siblings
  • Sibling Support Presentation from Jess Kruger during a G1DF GLUT1 Gathering for parents and caregivers
  • SibNet 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 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 - promotes and protects the human rights of people with intellectual and developmental disabilities
  • Special Olympics​ - through the power of sports, people with intellectual disabilities discover new strengths and abilities, skills and success
  • Special Needs Alliance - nationwide attorney network providing services for special needs planning
  • Understanding the Importance of Shared Decisions 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) 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 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
  • CHIP Children’s Health Insurance Program.
  • Social Security Disability information for adults and children
  • Medicaid makes it possible for certain low-income individuals and families to get health care when they could otherwise not afford it. It is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid sends payments directly to health care providers
  • Medicaid waivers are available in each state for certain individuals who do not meet the income limits that Medicaid requires. It may cover the expenses that primary health insurance does not
  • Patient Advocate Foundation
  • Global Genes RARE Toolkit:  Building a Stronger Financial Future
  • National Organization of Rare Disorders (NORD): patient assistance programs and resources, including education support grants, COVID-19 relief, respite service, and more
  • The Arc - promotes and protects the human rights of people with intellectual and developmental disabilities - check local chapters for support services and financial assistance
  • List of financial assistance programs and resources from EveryLife Foundation website
  • Oracle Health Foundation assists with various clinical cost assistance, equipment not covered by insurance, as well as lodging and transportation related to care, and vehicle modification grants in the US and Canada
  • Diaper assistence resource from the Child Neurology Foundation

Medication Assistance Programs
  • Medicine Assistance Tool:  MAT is a search engine with information on 900 public and private assistance programs that help those with financial need get access to their prescriptions​

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