Glut1 Deficiency Foundation Inc

Education and Awareness: The Glut1 Deficiency Foundation has several outreach programs to help raise awareness and improve education among stakeholders in the community. We hosted our 11th community convening, the Glut1 Deficiency Summit, which brought together researchers, clinicians, and patients and families to meet, share, and learn in Dallas, Texas. We hosted education exhibits at 4 professional meetings to education healthcare professionals in a position to diagnose patients or improve care. We created new resources for our website, and informational packets were mailed to 125 newly diagnosed families. Monthly virtual meetings were held on Zoom for parents and caregivers both in English and Spanish, for tweens and teenage patients, and for adult patients. A private Facebook group was launched.

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.