GLUT1 Deficiency Care Binder

One Place for the Information That Matters Most

Living with GLUT1 Deficiency often means becoming the keeper of an incredible amount of information.

• Medical history
• Medications
• Ketogenic diet details
• Emergency instructions
• Specialists
• Therapists
• School information
• Insurance cards
• Hospital records
• Daily routines

Over time, that information ends up in notebooks, folders, apps, emails, and stacks of paperwork. And when you need it most -during a medical emergency, a new appointment, a hospitalization, a respite stay, or simply meeting a new caregiver – it can be difficult to pull everything together quickly.

That’s why we’re excited to share a new resource introduced at the 2026 Scientific and Family Summit: the GLUT1 Deficiency Care Binder. Created by the Foundation’s Program Director, Dana Pottschmidt, this comprehensive resource was designed with one goal in mind – to help individuals and families keep the information that matters most organized, accessible, and ready whenever it’s needed. 

Why a Care Binder?

Every person with GLUT1 Deficiency is unique. Some individuals experience seizures. Others live primarily with movement disorders. Some use ketogenic therapies, feeding tubes, mobility equipment, or communication devices. Many have school supports, therapy teams, or adult service providers.

The Care Binder isn’t meant to look the same for every family. Instead, it’s designed to help you build a personalized resource that reflects your loved one’s individual needs. You can complete only the sections that apply to your family and remove pages that aren’t relevant. It’s yours to customize.

What’s Included?

The Care Binder covers a wide range of topics, including:

• Emergency information and important contacts
• Medical history and provider information
• Medications and ketogenic diet details
• Seizure and movement episode plans
• Daily routines and supports
• School and community information
• Communication and behavioral supports
• Mobility information
• Personal preferences, interests, and comfort items
• Legal and future planning resources
• Checklists for organizing important medical records

It also provides space for the information that often isn’t found in medical records—but can make all the difference when someone else is caring for your loved one.

Use It Wherever Life Takes You

Families may find the Care Binder helpful in many situations, including:

• Emergency room visits
• Hospital admissions
• New physician appointments
• School meetings
• Respite care
• Summer camps
• Therapy providers
• Adult day programs
• Residential settings
• Travel
• Emergency preparedness

Having one organized place for essential information can reduce stress, improve communication, and help others better understand how to provide safe, individualized care.

Make It Your Own

Think of this as a living document. As medications change, providers change, or your loved one’s needs evolve, simply update the pages that apply.

Some families may prefer to keep a printed binder at home. Others may choose to maintain a digital version that can be updated on a computer and printed as needed. However you decide to use it, our hope is that it saves time, reduces stress, and gives you confidence that important information is always close at hand.

Download Your Free Copy

The GLUT1 Care Binder is available as a free downloadable resource from the GLUT1 Deficiency Foundation.

We encourage you to personalize it, keep it updated, and use the sections that best fit your family’s needs.