16p11.2 Genetic Foundation

Profile Current (Last updated: Jun 03, 2026 )

PROGRAMS

Center of Excellence

The Boston Center of Excellence will serve as a leading multidisciplinary hub dedicated to advancing research, clinical care, and care coordination for individuals with 16p11.2 genetic variants. Anchored by collaboration among top-tier academic medical centers, clinicians, and researchers in the Boston area, the Center will integrate genetics, neurology, psychiatry, and developmental care to deliver comprehensive, standardized, and evidence-based services.

Budget
$50,000
Outcomes

Beyond clinical care, the Center will function as a catalyst for discovery by supporting longitudinal research, data sharing, and the development of clinical guidelines to improve outcomes across the lifespan. It will also provide critical support for families through care navigation, education, and access to specialized resources, while serving as a national model for rare disease Centers of Excellence.

CONTACT

16p11.2 Genetic Foundation

5471 Catowba Lane
Irvine, CA 92603

Faranak Herrera

fherrera@16pdel.org

Phone: 5105029267

16pdel.org