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.
Working for a Cure: Translating Science into Improved Health for Patients
The clinical research process is the only way that promising new science becomes a treatment for people affected by a disease. Our membership works with patient advocacy groups, academic investigators, and biotechnology companies to bring exciting science into clinical testing for ALD.
Conducting Quality Clinical Research in ALD
A single clinical trial constitutes an enormous undertaking and requires a substantial dedication of time and resources. With the generous help of allied individuals and organizations, ALD Connect is quickly building the trial infrastructure needed to rapidly conduct clinical research in ALD. Our expertly trained research sites, investigators, and management staff will help alleviate the burden of running a clinical trial. Our expertise can reduce the amount of time and money spent on clinical research so that we can find a cure faster.
Committed to Scientific Collaboration & Shared Resources
Sharing scientific resources is crucial to finding a cure. ALD Connect is building a sample repository and trial database. In the spirit of collaboration, we make our resources widely available to investigators conducting research in ALD.
Providing Information & Resources to Patient Communities
Patients and caregivers are the most important part of the clinical research process. ALD Connect is committed to keeping the patient/caregiver communities well-informed about clinical research, trial opportunities, and scientific advancements world-wide. ALD Connect is pioneering a patient-centered model of care and research that allows the ALD patient community to interface directly with ALD research community in order to give a more powerful voice to the interests, values, and priorities of the ALD patients. This new model will also make it easier for clinicians and scientists to share important ALD-specific knowledge with the patient community. This knowledge will include educational videos for patients and families, ALD-specific treatment guidelines, new scientific discoveries, and clinical trial opportunities.