GIGYF1 Day of Research

Thursday, November 19, 2026 · 8:30 AM–4:30 PM ET

Children's Hospital of Philadelphia, Morgan Center for Research and Innovation, 2716 South St, Philadelphia, PA 19146

Hosted by the GIGYF1 Research Foundation with Penn Medicine, Lurie Autism Institute and the Orphan Disease Center

Join us in person or online.

Why this day matters

Families, clinicians and researchers come together for one day to share what we know about GIGYF1, hear the latest research, and build a shared research roadmap with clear next steps.

Register

Please register to attend in person or online. Online attendees will receive the Zoom link after registering.

Register here

Agenda

Subject to change

Morning: Registration & Breakfast · Welcome from the Orphan Disease Center and Lurie Autism Institute · Why We're Here (Mansi Narang, Founder)

Family Voices: GIGYF1 families share their journeys · GIGYF1 variant summary data (Prishna Martinez)

Research Spotlight I: Dr. Maya Chopra (Boston Children's Hospital) · Dr. Hui Guo (Central South University)

Research Spotlight II: Emily Palen, CGC, MS (Simons Searchlight) · Dr. Heiko Runz · Dr. Aimee Deaton (Alnylam Pharmaceuticals)

Lunch

Research Spotlight III: Dr. Chiara Auwerx (Broad Institute of MIT and Harvard) · Dr. Joseph Buxbaum (Seaver Autism Center at Mount Sinai)

Rare Disease Innovation: Dr. Ingo Helbig · Dr. Ophir Shalem · Dr. Ben Prosser, with Q&A

Building a Shared Research Roadmap: open discussion, then setting priorities together

Closing Remarks: Lurie Autism Institute and Mansi Narang