Patient Registry Form

You are not alone!

Alexander Disease is unique, even among leukodystrophies.

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 treatment to the disorder. As such, we're preparing to build a database of Alexander Disease Patients.

Having a comprehensive registry as soon as possible not only creates a larger pool of participants for clinical trial, but also gives researchers a more accurate picture of AxD. That means we can potentially identify patients earlier, gain a greater understanding of disease progression, and achieve better patient outcomes.

By submitting this form, you are consenting to be contacted by EndAxD. You can revoke your consent for email communication at any time. All correspondence will be held confidential.