Understanding what ALD is and how it may change over time can help you create a plan that works for you and your family. Whether you’ve been on your ALD journey for a while or you’re just beginning, you’ve likely faced the question—what is ALD? Knowing the basics of ALD can be both empowering and helpful—especially when speaking with your team of health care providers.
Visit this website if you have a child that has been recently diagnosed with ALD.
“Have you just received a diagnosis of ALD through newborn screening? Through ALD newborn screening, affected children have the opportunity to benefit from life saving treatment.”
Uniting, Supporting & Empowering Females with X-Linked Disorders
An opportunity to share good times, peer-support, and education, with others in the ALD community.
ALD Connect is a non-profit organization that brings together patients, families, physicians, scientists, advocates, and industry.
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.
The ALD Alliance helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease. This fight begins by making sure every baby born in the United States is tested at birth for ALD.
The University of Minnesota Leukodystrophy Center‘s multidisciplinary team of specialists has unsurpassed, world-class experience in the diagnosis, monitoring and care of pediatric and adult patients with inherited leukodystrophies.
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois.
The mission of the IM ABLE Foundation is to remove obstacles that prevent people affected by disabilities from being physically active by providing grants, resources, fitness opportunities and motivation. We change attitudes about the potential of disabled individuals by redefining what is possible.