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APBD Research Foundation

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


Disclaimer: The information contained in this page is provided by the partnering patient organization for informational purposes only.  The 40 Percent Inc. does not warrant its completeness or accuracy, and it should not be construed as an endorsement by The 40 Percent Inc. or relied upon as a basis for your support for the partnering patient organization.  The information is subject to change without notice.

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