The APBD Research Foundation (APBDRF) was founded by three brothers with this diagnosis and two community advocates in 2005. They built a scientific advisory board and hosted the first few meetings informally. Since then, the foundation has been laser-focused on research, organizing patients and reaching out to allied rare disease groups. APBDRF has had significant breakthroughs, all made possible by highly collaborative efforts. Having melded science expertise with expressed patient needs, it now has two reliable diagnostic tests, two mouse models of the disease, a neuronal model, and a fibroblast bio-bank. APBDRF is optimistic that it can build on this foundation with a wider pool of collaborators and reach its goals to find a cure and vastly improve the lives of those affected. For more information, visit https://www.apbdrf.org.
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