Registration is NOW open. This December, MED13L families will gather in person at the Grand Hyatt Denver in Denver, Colorado for a day built around the latest MED13L research and the chance to spend real time with one another.

Event Details

📅 Friday, December 4, 2026
📍 Grand Hyatt Denver, Denver, Colorado
🚨 Hotel booking deadline: discounted rooms at the Grand Hyatt Denver are available through Tuesday, November 10, 2026. Reserve before the cutoff.
🎟️ Use code EARLYBIRD for 20% off adult tickets through October 15.

*For ACTION study participants: if your ability to travel is limited, we ask that you prioritize your in-person evaluation with Dr. Chopra in Boston.

You will hear the newest MED13L research and what it means for our families, and you will connect with our Chief Scientific Officer, Ricardo Ramirez, PhD, who will walk through where the science stands and take your questions. You will also spend time with other MED13L families. Being in a room with people who understand your day without explanation is its own kind of relief, and the day makes space to share stories, trade notes, and find the familiarity that comes from a shared diagnosis.

This gathering is part of the first (Mini) Meeting of the MEDs, where MED13L, MED13, and MED12 families come together for the first time. The three conditions are biological “cousins,” and connecting our communities is an early step toward the MED Alliance. Working with biologically related communities can open research paths that are harder for any single condition to pursue alone. Families will hear from researchers and advocacy leaders across the MED community about our shared and distinct biology, what we have learned since the 2025 Conference, and the questions still open.

The program also includes family-focused resources, discussion tables, time for questions, and lunch, with plenty of room to connect with researchers, advocacy leaders, and other families throughout the day. A respite room will be available for you and your child whenever you need a quiet break.

Families can take part in research on site through biospecimen collection with the COMBINEDBrain Roadshow.

After the meeting, families are welcome at an informal off-site gathering from 4:00 to 6:00 p.m. Location details to follow.

The Mini Meeting is held alongside the Cure SYNGAP1 and SLC6A1 Connect International Scientific Symposium and Family Conference, bringing several rare disease communities together at the Grand Hyatt Denver. Families arriving early are welcome to join the Rare Reception on Thursday evening, December 3. Additional details to follow.

Register early to help us plan the day and shape the agenda around what families need.