Glut1 Deficiency Foundation Inc

Advocacy and Support: The Glut1 Deficiency Foundation partners with other rare disease patient advocacy organizations to provide a representative voice for patients and families in public discussion and policy issues. The G1DF advocates for patients and families across school, healthcare, and disability programs to make sure the challenges of the disease are understood and that patient rights are being protected. Advocacy efforts for 2024 included multiple individualized support letters for school, insurance, and other related services for patients and the launch of support programs to provide individualized consultations to assist with ketogenic diet implementation and behavior/social support. Memberships in the National Organization of Rare Disorders (NORD), the Rare Epilepsy Network, CZI Rare As One, and COMBINEDBrain helped advance advocacy efforts and provide opportunities for training and sign on support for initiatives important to the Glut1 Deficiency and rare disease community.