You are not alone! Join our Contact Registry.

Alexander Disease is unique, even among leukodystrophies.

And it's a very exciting time in leukodystrophy research. Science is progressing rapidly not only for leukodystophies, but especially for Alexander Disease. We are finally able to move past the confusion and emotional devastation of the Diagnostic Odyssey and can look toward a New Frontier: actually bringing much needed treatments to patients. As such, we're preparing to build a contact database.

Understanding who is in our community creates a larger pool of participants for potential clinical trials and gives researchers a more accurate picture of AxD.