Glut1 Deficiency Foundation
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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 Brochure (English, Spanish, Portuguese)
  • Educational Video Project
  • Glut1 Deficiency FAQ
  • Glut1 Deficiency Foundation Conference Summaries
  • Family Stories​
  • Triheptanoin FAQ
  • Family Recommended Specialists
  • Glut1 Deficiency Patient Registry​
  • Materiales en Español
  • Glut1 Deficiency Foundation Facebook Page​
Additional Glut1 Deficiency Information
  • Professional Guide
  • Diagnostic Protocol
  • Genetics Home Reference
  • Gene Review
  • NORD Rare Disease Database
  • International League Against Epilepsy - Epilepsy Genetics
  • NIH Genetic and Rare Diseases Information Center (GARD)
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.
  • College Guide for Disabled Students
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
  • Guide to Home Remodeling for Disability and Special Needs
  • Special Olympics​

Join OUr Networks

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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Contact Us

​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • Share Your Story
      • Materiales en Español
    • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • Conferences
    • 2021 Conference - San Diego
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate