Registration for the in-person Simons Searchlight Family & Research conference for SETBP1 families closes Today (July 14th). The hotel discount also ends Today, July 14th so book your hotel room if you haven’t already!

Our 1st in-person conference will be held in Baltimore, MD at the Hyatt Regency Baltimore Inner Harbor from Thursday, August 4th-Sunday, August 7th! Families can choose to attend this conference in-person or virtually.

The conference is held in partnership with SETBP1 Society, CSNK2A1 Foundation, Hope for HIVEP2, and MED13L Foundation and supports all 4 gene groups.

What to Expect at the Conference

The conference will include specific sessions for SETBP1 and each of the other genetic communities, general presentation talks for everyone, in-person research study opportunities, family networking time, special activities for children and families, researcher and medical specialist networking time and much more!

Wanna hear the latest news about SETBP1-HD from SETBP1 experts OR visit with other SETBP1 parents with similar experiences OR enjoy a fun evening with other SETBP1 families and their kids along the Baltimore Inner Harbor OR learn techniques you can take home with you to make some aspects in your life a little easier? We have something for everyone!