Families
Welcome, Families
If you are here, it likely means you care deeply about a child with a 16p11.2 genetic variance. Navigating a 16p11.2 diagnosis can feel overwhelming—but you are not alone. Many families have walked this path before you, asking similar questions, navigating uncertainty, and advocating every day for their child’s well‑being and potential.
The 16p11.2 Genetic Foundation exists to support families like yours. Whether you are newly diagnosed, planning next steps, seeking connection, or interested in research, the resources below are here to support your family every step of the way. Our goal is to serve as a centralized, trusted hub where you can find reliable information, practical resources, and opportunities to connect with others who understand this experience.
What You Will Find Here
As the site continues to grow, families will be able to access:
- Educational resources written for parents and caregivers
- Guidance on medical, developmental, and educational pathways
- Connections to community spaces and family forums
- Information on research opportunities and conferences
- Tools designed to help families advocate effectively for their children
Our commitment is to build these resources thoughtfully, grounded in science, lived experience, and deep respect for families.
Newly Diagnosed
If your family is just beginning this journey, start here. The Newly Diagnosed section provides clear, compassionate guidance on what the diagnosis means and how to begin navigating next steps.
Family Roadmap
Every family’s path is unique, but you don’t have to navigate it alone. The Family Roadmap offers guidance across developmental stages, highlighting common medical, educational, and support considerations over time, so you can plan ahead while focusing on what matters most to your family right now.
Community Connections
Connection matters. Community Connections helps you find and engage with other 16p11.2 families, support groups, events, and shared experiences—offering understanding, encouragement, and the comfort of knowing others truly get it.
Simons Searchlight
Simons Searchlight is a global research program partnering directly with families to advance understanding of 16p11.2 conditions. This section explains how families can participate, what data is collected, and how shared experiences are driving discoveries that may improve care and outcomes.
Clinical Research
Research opens doors to better care and deeper understanding. The Clinical Research section highlights current and upcoming studies related to 16p11.2 syndromes, helping families explore opportunities to learn, contribute, and stay informed about advances that could shape the future.