About ALD Connect

Our Mission

Our mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.

Every patient deserves a healthy life, every clinician hopes for the tools necessary to keep their patients healthy, and every scientist dreams of discovering the medical breakthrough that will eliminate disease. ALD Connect was established to unite patients, clinicians, and scientists from around the world with a common goal: to improve the lives of ALD/AMN patients by providing an open framework to deliver scientific breakthroughs to the patients who need them.

To achieve our goal, ALD Connect functions as an academic research consortium, a contracted research organization, and a resource tool for the ALD/AMN community. Learn more about our structure.

Our Values

ALD Connect is committed to the principles of open scientific communication, peer review, full and open disclosure of potential conflicts of interest, and democratic governance of its organization and activities.

Our History

ALD Connect was founded in January 2013 by a dedicated group of clinicians, scientists, patients, and patient advocates. The organization arose out of a collective recognition that only a collaborative network would allow clinical care to keep pace with the many exciting scientific advances in the study of ALD/AMN. As of July 2013, ALD Connect represents seven clinical centers across North America with plans to incorporate many more ALD/AMN clinicians, scientists, and academic centers both nationally and internationally in the years ahead.

ALD Connect is modeled on the tremendous success of its sister organization, the Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium and is deeply grateful for the generous guidance and inspiration offered by NEALS and its team of dedicated scientists and staff members.