Our 2024 SETBP1 Community Survey is available for SETBP1 families to complete in English, Dutch, French, German, Italian, Portuguese, and Spanish. We want to hear from you! Please take about 15 minutes to complete this short survey

There is an additional section included for SETBP1 parents and caregivers of young adults as we have very little data on the impact of SETBP1-HD and related disorders on individuals over 18 years of age.

Our hope is to have at least 30 completed surveys by the end of May!