Whether you travel by plane, car, train, or bike, we want to see YOU and YOUR FAMILY at our first EVER in-person conference for SETBP1 families. Bring the whole family! You’ll enjoy meeting other families, sharing experiences and spending time with people who understand. We look forward to creating new memories as we learn, laugh and live — TOGETHER!

Attend sessions and workshops to learn all about SETBP1. Hear from and ask questions of experts in the fields of research, communication, family care, behavior and MORE! Also, enjoy a ride in the harbor Saturday afternoon with other SETBP1 families on a pirate ship!

With so much to still dilover about SETBP1-HD, we seek out opportunities to learn as much as we can. Several opportunities will be available at the conference to help researchers and medical scientists to further understand the disorder and its impact.

Simons Searchlight is hosting this conference in partnership with SETBP1 Society, CSNK2A1Foundation, Hope for HIVEP2, and MED13L Foundation.