A Milestone for MED13L Families

This December, MED13L families will gather in person at the Grand Hyatt Denver in Denver, Colorado. The day brings our community together around the latest MED13L research and the chance to spend real time with one another.

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.

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.

Discounted rooms at the Grand Hyatt Denver are available through November 10, 2026.