Community Connections

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Connect. Learn. Support.

Staying connected is an essential part of navigating life with a 16p11.2 genetic variance. The 16p11.2 Genetic Foundation offers several ways for families, individuals, clinicians, and researchers to connect, learn, and support one another.

Facebook Community

We host two Foundation‑run Facebook spaces, each serving a different purpose:

16p11.2 Genetic Foundation Facebook Page

A public page for Foundation news, updates, and announcements.

16p11.2 Genetic Foundation Private Facebook Group

A moderated, private group that functions as a structured forum for discussion and peer support. Conversations regarding symptoms are organized by genetic variance using clear tags such as #pdel, #ddel, and #dup.

We encourage families and community members to join the space that best fits their needs.

Conferences

16p11.2 Genetic Variance Conference – Summer 2027

Our upcoming conference will bring scientists, clinicians, and families together to advance care through cutting‑edge research, expert talks, community connection, and opportunities to engage directly in research. This event will build on the collaborative model established in 2025.

Education & Programming

Quarterly Educational Seminars

In partnership with the University of Washington IHDD, these sessions focus on Scientific Advancements in Research and Clinical Care for 16p11.2 Genetic Syndromes intended for families.

Bi‑Monthly Webinar Series

Shorter, family‑centered virtual sessions covering a variety of topics designed to promote connection, belonging, and shared learning.

Quarterly Newsletters

Updates on Foundation work, research progress, upcoming events, and community highlights.

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These community offerings are designed to meet people where they are, whether newly diagnosed or years into the journey, and to foster informed, compassionate connection across the 16p11.2 community.