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
  • ​Behind the Seizure no cost genetic testing for children under 60 months
  • low cost genetic testing clinically 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.

​​Related Genetic Information
  • Kris Engelstad, Certified Genetic Counselor and member of our Medical Advisory Board, discusses the genetics of Glut1 Deficiency
  • Nonsense Mutation Foundation easy to understand videos explaining the role of genes and mutations in disease

School Resources

Ketogenic Diet

Support Groups and Family Resources
  • Glut1 Community Connect Private discussion forum on the Discourse platform.
    Must be a member of the Family Network to participate in Glut1 Community Connect
  • RareConnect Online Community – Glut1 DS  in German, English, French, Spanish, and Italian
  • GLUT1 en Español Closed Facebook Group in Spanish
  • Glut1 DS Care and Support International Closed Facebook Group
  • 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 RARE Toolkit: Navigating Health Insurance​
  • 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.

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

Financial Assistance

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: presentation notes from the 2022 Glut1 Deficiency Foundation Family Conference with thoughts on their tissue donation experience