Organizations active in familial Alzheimer’s disease research
A Youngtimers Guide ・ Last Reviewed Nov 12 2025
While countless organizations are advancing Alzheimer’s research, only a handful focus specifically on familial Alzheimer’s disease (FAD) — the rare, inherited form of the condition caused by genetic mutations passed through families.
Below, you’ll find some of the organizations and people that are leading efforts to understand, diagnose, and ultimately prevent or treat FAD.
Dominantly Inherited Alzheimer’s Network (DIAN)
Washington University School of Medicine, known as WashU Medicine
Based in St. Louis, Missouri, DIAN coordinates US and international observational and prevention studies focused on studying and preventing FAD. It also organizes the DIAN Expanded Registry ⧉, which helps researchers find participants who might be interested in clinical trials.
Learn more:
The directors and principle investigators at DIAN include:
API (Alzheimer’s Prevention Initiative)
Banner Alzheimer’s Institute
Based at in Phoenix, Arizona, API partners with UdeA to coordinate the Colombia prevention study, also known as the Autosomal Dominant Alzheimer’s Disease (ADAD) Colombia Trial ⧉, focused on preventing FAD, also known as ADAD.
Learn more: API (Alzheimer’s Prevention Initiative) ⧉
Co-directors at API include:
Neurosciences Group of Antioquia (GNA)
University of Antioquia, known as UdeA
Based in Antioquia, Colombia, GNA partners with API to coordinate the Colombia prevention trial, the Autosomal Dominant Alzheimer’s Disease (ADAD) Colombia Trial, focused on preventing FAD. This group also leads the API Colombia Registry ⧉, which includes more than 6,000 members of the PSEN1 E280A kindred.
Learn more: Neurosciences Group of Antioquia (GNA) ⧉
Key figures from GNA include:
Dr. Francisco Lopera ⧉ - Pioneering Colombian neurologist, professor, and researcher who identified the world's largest known family with FAD, discovering the PSEN1 E280A (Medellín) mutation, and leading groundbreaking prevention trials that reshaped global understanding of the disease. Passed away in 2024.
Dr. David Aguillón Niño ⧉ - Coordinator at GNA as of 2024.
