For the first time, the lived experience of Alexander Disease has been documented and formally entered into a record drug developers, regulators, and researchers will reference for years.
The Voice of the Patient Report is a formal record of feedback from the End AxD community meeting 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.
