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.www.ultrarareadvocacy.com
Patient Advocacy Groups
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.www.globalgenes.org
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.www.glut1.it
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.www.matthewsfriends.org
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.www.charliefoundation.org
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.www.epilepsy.com
Resources for people with Glut1 DS
Commission on Medical Therapies: Ketogenic DietsThe 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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