Who knows the most about Adrenoleukodystrophy?
Yes, there is much to be known about the genetics and biochemistry. Yes, there are many experts and subspecialists. But no one experiences the burden and pain of the disease as you do. No one knows the frustration and despair of searching for a successful treatment as you do. No one knows what it is like to endure the side effects and risks of the few treatments available today.
No one else understands the toll this disease can take upon families, relationships and friends as you do.
A Collaborative Effort to Fight ALD/AMN
It’s a radical idea: patients, families, doctors, and researchers working together as equal partners.
When you join ALD Connect you’ll be part of a global effort to fight ALD/AMN. You’ll work with doctors and researchers to shape the direction of research and care. For perhaps the first time in the history of this disease, your experiences, your concerns, and your ideas will take center stage.