16p11.2 Genetic Foundation

When Dr. Faranak Herrera received her son’s 16p11.2 diagnosis at just three years old, she quickly discovered what so many families face: there were no established medical treatments, no clear guidance, and few resources for parents. Instead of accepting that gap, she chose to change it.

She built the support network she wished had existed when their journey began. In its early years, she personally sustained the organization through significant personal investment and countless physician hours. Today, her leadership continues to fuel a movement focused on understanding, advocacy, proper care, and hope for every family affected by 16p11.2 differences.

We envision a world where families are supported with evidenced-based guidance, robust research has led to meaningful treatments, and patients with 16p11.2 genetic variances have hope for long-term wellness by 2030. We do it for our children.

We strive to convene, connect, advocate for policy, drive better care and advance research.