Resources
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
- What is Glut1 Deficiency? Osmosis.org Video
- Key Terms in Glut1 Deficiency
- Educational Brochures
- International GlutDS Diagnosis and Treatment Consensus Guidelines
- Educational Video Project
- Glut1 Deficiency FAQ
- Glut1 Deficiency Foundation Conference Summaries
- Family Stories
- Triheptanoin FAQ
- Family Recommended Specialists
- Glut1 Deficiency Patient Registry
- Glut1 Emergency Preparedness Presentation Slides
- Materiales en Español
- Glut1 Deficiency Foundation Facebook Page
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.
School Resources
- Cognition and Learning
- Movement Disorder Tracking Sheet
- Sample School Letters for Glut1 Deficiency and the ketogenic diet: Letter 1, Letter 2
- Sample 504/Medical Plan
- Global Genes RARE Toolkit: The ABC's of Advocating in the Classroom
- Wrightslaw legal resources on education law, special education law, and advocacy for children with disabilities.
- My Child’s Special Needs: federal law information from the Department of Education.
Ketogenic Diet
Support Groups and Family Resources
International Glut1 Deficiency Parent Groups
Patient Advocacy Resources
Epilepsy Resources
Movement Disorder Resources Related Genetic Information
Medication Assistance Programs
- Information and Resource Links
- The Charlie Foundation for Ketogenic Therapies ketogenic diet resources (based in the USA)
- Matthew’s Friends Ketogenic Dietary Therapies ketogenic diet resources (based in England)
- Keto Hope Foundation supporting families and dietitians
- Ketogenic Diet India ketogenic diet clinics and information (based in India)
- The Daisy Garland ketogenic diet resources (based in the UK)
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
- Some1 with Glut1 International Secret Facebook Group (for privacy) for teens and adults with Glut1 Deficiency
- Glut1mom.com Spanish blog from Glut1 parent Vivian Mathis
- Glut1Ataxia.com blog about non-epileptic Glut1 Deficiency from Glut1 parent Debra Lane
- SibNet a closed Facebook group for adult brothers and sisters of people with disabilities
- VIPSibling a resource focused on the experiences and and emotions of well siblings in rare epilepsy families
- DEE-P Connections resources and support for families living with developmental epileptic encephalopathies
International Glut1 Deficiency Parent Groups
- Glut1 Deficiency UK
- European Glut1 Deficiency Organisation
- Germany
- Norway
- Italy
- The Netherlands
- Spain: Asglutdiece, Aglut1nate
- France
- Japan
- Sweden
- Denmark
- Israel
- Chile
- Argentina
- Finland (brochures available here in Finnish translations)
Patient Advocacy Resources
- Individuals with Disabilities Education Act (IDEA) IDEA guarantees that students receive help tailored to their unique needs.
- My child’s special needs for school (IEP) A Guide to the Individualized Education Program.
- Social Security Benefits
- Yellow Pages for Kids with Disabilities Find resources available in your area.
- Easter Seals is a charitable organization that assists children and adults with disabilities and special needs.
- American Bar Association for assistance locating a local attorney or finding reduced-cost legal aid
- 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
- NORD (National Organization of Rare Disorders): Medic Alert Program and COVID-19 Support Resources
- 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.
- J Kiffin Penry Patient Travel Assistance Fund: travel assistance from the Epilepsy Foundation for epilepsy/seizure disorder patients who must travel 50 miles or more from their home for specialized medical care.
Epilepsy Resources
- C.U.R.E Citizens United for Research in Epilepsy
- Epilepsy Foundation Find your local Epilepsy Foundation chapter.
- Seizure Tracker Log and track seizure activity, appointments, and medication schedules through a simple calendar interface.
- You Are Not Alone: Toolkit for Parents of Teens with Epilepsy – Department of Health and Human Services, Centers for Disease Control and Prevention, Epilepsy
- National Association of Epilepsy Centers Find specialized medical and surgical care for Epilepsy
- Danny Did Foundation advancing awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP)
Movement Disorder Resources 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
- CHIP Children’s Health Insurance Program.
- Social Security Benefits for children with disabilities.
- 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 for certain individuals who do not meet the income limits that Medicaid requires. It may cover the expenses that primary health insurance does not. The following page contains information on the different Medicaid waiver programs available in each state.
- Patient Advocate Foundation
- Global Genes Webinar: Getting Financial Help - Qualifying for Disability and Other Insurance Matters
- 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, Medic Alert scholarships, and more
Medication Assistance Programs
- Needymeds A list of programs that assists people who cannot afford medicine or healthcare costs.
- Partnership for Prescription Assistance A tool to help find patient assistance programs that you may qualify for.
- A list of medications and their contact information for patient assistance programs.
