For the first time, the lived experience of Alexander Disease has been documented and formally entered into the record drug developers, regulators, and researchers will reference for years.
The Voice of the Patient Report is the formal record of what the End Alexander Disease community shared on December 5, 2025. It includes:
• Submitted patient comments, written submissions from patients, caregivers and families worldwide
• Poll results – data captured from participants at the meeting
Together these tell the story of Alexander Disease in the community’s own words: the day-to-day realities, the unmet needs, the treatment priorities, and what meaningful progress looks like from inside the community.
