Keto Care Project | Glut1 Deficiency Foundation

about

Glut1 Deficiency is a rare, metabolic condition where glucose transport into the brain is impaired, causing a wide range of neurological symptoms. Ketogenic diets are the current standard of care.

Not all patients have access to ketogenic clinics or high quality ketogenic diet support. The goal of the Keto Care Project is to provide expert ketogenic dietitian care to underserved patients and families.

eligibility

a confirmed Glut1 Deficiency diagnosis is required for eligibility for the Keto Care Project
applicants should reside in the United States
a limited number of participation opportunities are available

details

services will be provided virtually on the Zoom platform
an application process will be required
if applicants are approved for services, a referral will be made to one of the participating Keto Care Project dietitian providers
participants will coordinate with their assigned Keto Care Project dietitian provider to collect additional patient information, arrange appointments, and continue care
participation will be confidential
Keto Care Project dietitian services will be available in both English and Spanish
dietitian services under the Keto Care Project will be provided at no cost to patients or families
as part of this pilot project, participants will be required to complete a brief survey to help gauge success and value to the community and to make any needed improvements for the future

types of support

There will be two types of support available through the Keto Care Project:

Consultation Support:

a one-time consultation (60 minutes) to address a personal goal or goals for ketogenic dietary therapy
available to those who are already under the care of a ketogenic diet team, but need additional support or second opinions
the current care team will not be contacted unless permission is given or collaboration requested

Full Support:

6-8 months of full service ketogenic diet education and support from a Keto Care Project dietitian provider
available to those who do not otherwise have ketogenic diet services available to them
a referral from the treating neurologist is required (referral form found here)
the Keto Care Project dietitian provider will collaborate with the treating neurologist as needed

support providers

a group of highly qualified and experienced ketogenic diet dietitians have been selected to serve as Keto Care Project providers
applicants approved to participate in the Keto Care Project will be referred to a dietitian provider who matches needs

privacy policy

the G1DF will not share any personal information or details about your participation or identify you in any way except to share your application with the dietitian who will be providing the services you requested
the G1DF may report outcomes from the projects to help measure success, make improvements, create resources, or fulfill our grant reporting requirements, but that information would be group summaries in aggregate with no individual or personally identifiable information included (for instance, number of participants, age ranges, common challenges identified, etc.)
more details on the general privacy policy of the G1DF may be found here