News
This page shares updates, announcements, and milestones from the Foundation. Here you will find brief news items, highlights from our work, and links to learn more.
We aim to keep news clear, timely, and relevant to families, clinicians, scientists, and community partners.
Latest News
Community Assessment Survey: Results and Insights
We have released the results and key insights from our recent community assessment survey.
The survey brought together perspectives from caregivers, individuals with lived experience to identify shared needs and priorities across the 16p11.2 community.
Key themes to emerge included:
- Clear gaps in coordinated clinical care and practical guidance across the lifespan
- Strong demand for earlier, more consistent intervention and follow‑through
- The burden placed on families to navigate complex medical, educational, and support systems without clear roadmaps
- The need for better translation of research into everyday clinical and family‑facing practice
Rather than serving as a static report, these findings are being actively used to guide:
- Foundation strategic planning
- Research prioritization and collaboration
- Development of clinical guidelines, family roadmaps, and educational resources
- Advocacy and systems‑level improvement efforts
Stay Connected
To receive news updates as they are released:
- Subscribe to our email list
- Check this page periodically
- Follow Foundation announcements through our community social channels
A Note on Transparency
We are committed to sharing our work openly.
When we release data, reports, or summaries, we aim to:
- Clearly explain purpose and limitations
- Respect the voices of those who contributed
- Show how findings guide next steps
Thank you to everyone who participates in surveys, assessments, and feedback efforts. Your input shapes what we do.
More news and updates coming soon.
More to discover
Our goal is to provide support, promote research and champion hope for those affected by 16p11.2 genetic variations. We encourage you to continue exploring all that our website has to offer and welcome support of all kinds.