Resource List

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

Additional Glut1 Deficiency Information

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.

Genetic Testing Resources

Behind the Seizure - no cost genetic testing for children under 60 months
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.

Ketogenic Diet

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)
Ketogenic Diet India Ketogenic Diet Clinics and Information (based in India)

Support Groups and Family Blogs

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

International Glut1 Deficiency Parent Groups

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)

Disability Programs, Services, and Benefits

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

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.
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
Epilepsy Safety in the Home Tips and strategies for making your home environment safer during a seizure.
Danny Did Foundation advancing awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP)

Movement Disorder Resources

International Parkinson and Movement Disorder Society

Financial Assistance

CHIP Children’s Health Insurance Program.
Social Security Benefits for children with disabilities.
Tax Strategies for Parents of Kids with Special Needs
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

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.

Other Resources