GLUT1 Deficiency Foundation
Collaborative Care Centers
The GLUT1 Deficiency Foundation is excited to launch a new program to recognize excellence in medical care for the GLUT1 Deficiency community.
The Collaborative Care Center designation honors exceptional hospitals and clinics that demonstrate comprehensive, multidisciplinary, and patient-centered care and work collaboratively across the GLUT1 Deficiency community to further knowledge, advance research, and support patients and families.
The application period for this inaugural cycle was open from October 1st to December 1st, 2025. The G1DF anticipates future opportunities for new applications and renewals for existing Collaborative Care Centers every 3 years.
benefits for centers:
Leadership: Collaborative Care Centers are seen as pioneers in GLUT1 Deficiency, contributing to advances in patient care, education, advocacy, and research.
Collaboration: Collaborative Care Centers become part of a larger GLUT1 Deficiency Collaborative Care Network, enabling the exchange of best practices, consultations on patient care, and coordinated translational research.
Referrals: Collaborative Care Center details, available specialists, and patient referral information will be easily available in one place on the G1DF website.
Recognition: Collaborative Care Center efforts to provide exemplary care to patients with GLUT1 Deficiency will be recognized publicly and will be promoted through G1DF activities and programs.
collaborative care center designations
The G1DF has developed a comprehensive list of ideal specialties, services, qualifications, and expectations to have in place for designation as a GLUT1 Deficiency Collaborative Care Center. An open application process will allow interested centers to step forward and submit their information for consideration, and a formal review and scoring process will help ensure decisions are based on consistent standards, clinical expertise, and a demonstrated commitment to providing high-quality, coordinated, and patient-centered care.
center criteria:
Core Essential Specialties and Services:
- neurologist familiar with GLUT1 Deficiency
- genetic or metabolic specialist familiar with GLUT1 Deficiency
- ketogenic dietitian clinic and/or nutrition services
Additional Medical Specialties:
- developmental pediatrician
- endocrinologist
- epileptologist
- gastroenterologist
- gynecologist
- movement disorder specialist
- nephrologist
- neuropsychologist
- ophthalmologist
- orthopedist
- psychologist/psychiatrist
- sleep specialist
Therapies:
- behavior therapy
- feeding therapy
- occupational therapy
- physical therapy
- sensory integration therapy
- speech and language therapy
Support Services:
- care coordinator
- financial aid coordinator
- insurance coordinator
- patient advocate
- social worker
- transition planning for pediatric to adult care
clinic expectations:
Demonstrate Clinical Expertise
- Maintain a strong knowledge base and clinical expertise in GLUT1 Deficiency.
- Follow current consensus guidelines and best practices for diagnosis and care.
- Recognize each patient as an individual and provide personalized, tailored care.
Provide Coordinated, Multidisciplinary Care
- Offer care through a collaborative team approach with core specialists.
- Facilitate referrals and participate in care when additional specialties and services are needed.
- Hold regular care team discussions to review patient evaluations, test results, and care plans.
Deliver Patient-Centered Support Services
- Facilitate smooth and timely referrals to establish ongoing care or for expert consultations.
- Accept a range of payment options and assist with insurance coordination.
- Provide access to social workers, care coordinators, and patient advocates as needed for added support.
- Coordinate appointment scheduling when possible to reduce burden on families.
- Offer transition support for patients moving from pediatric to adult care.
Engage in the GLUT1 Deficiency Collaborative Care Network
- Work to expand understanding of GLUT1 Deficiency among medical providers through educational events, mentoring, clinical training, and participation in G1DF-sponsored initiatives.
- Be available to consult on complex cases and support medical providers in under-resourced settings through the GLUT1 Deficiency Collaborative Care Network activities.
Engage with the GLUT1 Deficiency Collaborative Research Network
- Stay current with the latest research in GLUT1 Deficiency.
- Participate in clinical trials and research studies when appropriate.
- Contribute to data collection when appropriate and with proper support.
Collaborate with the G1DF and Community
- Work with a designated liaison to coordinate communication between the Collaborative Care Center, the G1DF, and families.
- Share updates and information with all stakeholders in the Collaborative Care Center.
- Help facilitate local outreach and connect families to G1DF resources and programs.
Earn and Maintain Patient and Family Trust
- Demonstrate a high level of patient and family satisfaction, based on G1DF and institutional metrics.
- Address repeat concerns or gaps in care promptly and constructively when feasible.
Maintain Good Standing
- Meet or exceed expectations throughout a 3-year term.
- Actively participate in the renewal process at the end of each term.
consultations:
One of the clinical expectations for Collaborative Care Centers will be the willingness to consult on complex cases and support medical providers in under-resourced settings through the GLUT1 Deficiency Collaborative Care Network activities.
The G1DF will coordinate an application system to refer questions or requests for consultations from medical providers outside the GLUT1 Deficiency Collaborative Care Network. These will be matched to Collaborative Care Center providers with relevant expertise, and care and consideration will be given to ensuring equal distribution so as not to overburden.
Questions for Application:
- Name of medical provider:
- Location of medical provider:
- Age of patient:
- Specific questions or concerns to discuss:
- Collaborative Care Center requested:
Virtual Sessions:
The G1DF may host periodic virtual sessions where medical providers can attend to ask questions directly to clinicians or dietitians in the GLUT1 Deficiency Collaborative Care Network
succession planning:
The G1DF must be notified if the clinic lead or any primary team members leave the center. A written plan will be provided to the G1DF to address succession plans.
collaborative care center application
Applications for this inaugural cycle will open on October 1, 2025 and close on December 1, 2025. Decisions will be announced in January 2026.
Please reach out to Glenna Steele at [email protected] with questions about the application or process - thank you for your interest!
Collaborative Care Center Application
The information collected by the GLUT1 Deficiency Foundation will not be distributed outside of the G1DF and is used solely for the purpose indicated. Questions or concerns can be directed to Glenna Steele at [email protected].