Announcing the Collaborative Care Network
We’re excited to share an important milestone for the GLUT1 Deficiency community: the designation of 25 Collaborative Care Centers to recognize exceptional hospitals, clinics, and teams of healthcare providers who demonstrate comprehensive, multidisciplinary, and patient-centered care. These centers will form a global Collaborative Care Network committed to advancing high-quality, coordinated care for individuals and families affected by GLUT1 Deficiency.
Purpose:
The Collaborative Care Center program was created not only to recognize expertise, but also to strengthen patient care through collaboration – bringing experienced teams together to share knowledge, refine best practices, and improve outcomes across every stage of life.
Families living with rare diseases like GLUT1 Deficiency often encounter fragmented care and limited access to providers with experience across the full spectrum of the condition. Too often, families are left searching for specialists or explaining a complex diagnosis to providers unfamiliar with its nuances and complexities. This collaborative network helps address those challenges by connecting families to multidisciplinary teams that already work together to deliver coordinated, comprehensive care.
Reach:
The newly designated Collaborative Care Centers span the United States, Canada, Europe, and South America, reflecting both the global nature of the GLUT1 Deficiency community and the shared commitment of clinicians around the world to work together. As a network, these centers will exchange clinical insights, identify gaps in care, and engage with the research community to help move discoveries from bench to bedside.
The Collaborative Care Network is part of the GLUT1 Deficiency Foundation’s broader mission to build and strengthen partnerships and connections, drive research progress, improve patient care, and ease burdens for patients and families.
Application Process:
Centers were selected through a rigorous application and review process that evaluated clinical expertise, team coordination, family-centered practices, and commitment to collaboration. Designation recognizes both current experience and willingness to engage and grow as part of this network.
We are deeply grateful to all of the centers for their time, effort, and interest in applying and appreciate their leadership and willingness to be part of this new initiative. The level of thought, care, and dedication reflected in the applications underscored the strength of this clinical community, the devotion and concern they have for their patients and families, and for the collective commitment to improving care and changing outcomes for everyone with GLUT1 Deficiency.
Center Directory:
A full list of the 25 designated Collaborative Care Centers is available in a special directory on our website, with additional details about the center’s leadership, primary team members, referrals, appointment process, and more. Information can also be found about the program requirements and what designation means.
Current designations run from 2026-2029, and we encourage families to share feedback on their experiences with centers in the Collaborative Care Network. Additional centers are invited and encouraged to apply in the next cycle.
For families without a designated center nearby, the Family Recommended Specialist List offers a resource to identify clinicians worldwide who are experienced in GLUT1 Deficiency and have been recommended for the list by other patients and families in their care.
We are honored to work alongside these distinguished teams as trusted partners in building better outcomes and brighter futures, and we are thankful for the support we receive from the community to make initiatives like this one possible.
