ALD Connect Information

We are an international, independent, non-profit group of ALD patients, patient advocates, and researchers, who collaboratively educate, advocate, and conduct clinical research among the men, women, and children affected by X-linked adrenoleukodystrophy (ALD). Our Mission is to improve the lives of individuals with ALD by facilitating communication, raising awareness, improving education, and advancing scientific understanding of the disease. Our Vision is to revolutionize care for ALD by facilitating communication between patient communities and clinical trial networks thus enabling rapid identification, optimization, and implementation of therapeutic strategies and, ultimately, a cure. Our values commit us to the empowerment and protection of patients and to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, observational studies, and educational activities within the ALD community. We are dedicated to the principles of open scientific communication, peer review, full and open disclosure of potential conflicts of interest, and democratic governance of the organization and its activities.