THE PATIENT VOICE
Collective Voices in Glut1 Deficiency Project
The Plan
The Glut1 Deficiency Collective Voices Project was designed to have a better understanding of the patient and family experience across a broad range of areas.
The Outcomes
260 individuals from 31 countries participated in the survey. Snapshot summaries have been shared in presentations and the slides can be found below.

Collective Voices
Project Goals

Better understand the patient and family experience

Better define the range of symptoms

Identify gaps in knowledge and understanding of the disease

Indentify gaps in treatment and patient care

Better understand the burdens of this disease on patients and families

Identify the most important components for a natural history study

Develop and prioritize future service programs

Create and prioritize a strategic research plan

Develop better and more effective clinical trials for potential future treatments
Collective Voices