Patient advocacy & resources for Glut1 DS*

If you or your loved one has been diagnosed with Glut1 DS, remember that you have a community to support you. The following independent patient advocacy groups can provide insight and champion awareness.

Patient Advocacy at Ultragenyx

At Ultragenyx, the patient advocacy team is passionate about educating and supporting you: patients, families, and caregivers affected by rare and ultrarare diseases. Through this site you can find valuable resources, hear from others who live with rare diseases, and learn more about out commitment to the rare disease patient community.

Patient Advocacy Groups

Global Genes

Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare-disease community, including patients, caregivers, advocates and clinical partners. Their mission is to eliminate the challenges of rare diseases.

Italian Glut1 Foundation

The Italian Glut1 Foundation supports and advocates for people living with Glut1 DS. It promotes research towards a cure, raises public awareness, and works to stimulate scientific research and cooperation.

Matthew’s Friends

Matthew’s Friends specialize in medical ketogenic dietary therapies, providing information, training, research grants, and support. In addition, if you’d like to find a ketogenic diet center near you, Matthew’s Friends has a complete list of centers in Ireland and the UK.

Charlie Foundation

The Charlie Foundation for Ketogenic Therapies was founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders, and select cancers. If you’d like to find a ketogenic diet center near you, the Charlie Foundation has a complete list.

Epilepsy Foundation

The mission of the Epilepsy foundation is to stop seizures and SUDEP [sudden unexpected death in epilepsy], find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.

Resources for people with Glut1 DS

NIH Genetics Home Reference

The Genetics Home Reference has a guide to many genetic conditions. In a helpful Q&A format, it provides information as well as links to helpful resources.

Seizure First Aid

Seizure First Aid is a YouTube video from the Epilepsy Foundation showing what you can do when you see someone having a seizure.

Seizure Tracker

Seizure Tracker is a free, easy-to-use online tracker that you can use anywhere to track seizures, triggers and medical information.

Ketogenic Diet – Keto Cook

Keto Cook features creative ketogenic meals for all kinds of Keto kids. It has recipes, shopping lists, and other helpful information.

Apps for diet tracking

If you’d like an app for following the ketogenic diet, AppCrawler has an online catalog to help you find the best apps for meal planning and diet maintenance.

Commission on Medical Therapies: Ketogenic Diets

The International League Against Epilepsy offers a resource for every aspect of the ketogenic diet, including basic information, news, products, and first-hand stories.


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