Resources
Some listed resources contain links to third party external sites, for which the Glut1 Deficiency Foundation has no responsibility or oversight.
Glut1 Deficiency
- 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
- Related Links
- Materiales en Español
- Glut1 Deficiency Foundation Facebook Page
Professional Resources
Ketogenic Diet
Support Groups
International Glut1 Deficiency Parent Groups
Benefits for People with Disabilities
Epilepsy Resources
Financial Assistance
Medication Assistance Programs
Special Education Laws
Other Resources
- 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)
- Keilah Foundation Ketogenic Diet Resources (based in South Africa)
Support Groups
- GLUT1DS Yahoo Group International Glut1 Transporter Deficiency Syndrome Support Group
- 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
International Glut1 Deficiency Parent Groups
- Germany
- Norway
- Italy
- The Netherlands
- Spain (Facebook page, website)
- France
- Japan
- Israel
- Chile
- Argentina
- Glut1mom.com – Spanish blog from Glut1 parent Vivian Mathis
- Glut1Ataxia.com - blog about non-epileptic Glut1 Deficiency from Glut1 parent Debra Lane
Benefits for People with Disabilities
- Health and Disability Associates Website that explains in layman’s terms community resources for people with disabilities. Also, a great asset for people who have had their Federal disability benefits initially denied.
- 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 autism and other disabilities and special needs. It provides services, therapies, and treatments tailored to individual communities.
- 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.
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
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.
- 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.
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
Special Education Laws
- Wrightslaw is a website that provides reliable information and resources about legal issues concerning education law, special education law, and advocacy for children with disabilities.
- 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.
- My Child’s Special Needs: federal law information from the Department of Education.
- College Guide for Disabled Students
Other Resources
