New SETBP1 Parent Communication & Speech Therapy Survey — now available in 8 languages!

Understanding how individuals with SETBP1 haploinsufficiency disorder and related disorders communicate, and how families support that communication, is one of the most important priorities in our community. Today, we’re excited to share the launch of our new SETBP1 Parent Communication & Speech Therapy Survey, created to gather meaningful insights from families around the world.

This survey focuses on the everyday communication abilities of children and adults with SETBP1, the therapies they receive, and what families have found helpful (or not helpful) along the way. By hearing directly from parents and caregivers, we can better identify common patterns, highlight strengths, and understand where additional support or resources are needed.

What the Survey Covers

This short survey (about 15 minutes or less) asks about:

• Your child’s communication abilities across different areas
• Speech, language, and communication therapies they currently receive
• Strategies or supports that have been effective
• How communication skills have changed over time
• Differences in experiences across countries and regions

If you have more than one child with a SETBP1 neurodevelopmental disorder, we ask that you complete the survey separately for each child. Only one parent or caregiver per family needs to participate.

Available in 8 Languages

To ensure accessibility for families worldwide, the survey is now available in:

• English
• Nederlands
• Français
• Deutsch
• Italiano
• Português (Brasil)
• Português (Portugal)
• Español

This multilingual effort reflects our commitment to making SETBP1 research inclusive and representative of our global community.

Why Your Participation Matters

Every completed survey adds to a growing body of knowledge that helps:

• Researchers understand communication strengths and challenges
• Clinicians tailor therapy recommendations
• Families learn from shared experiences
• The SETBP1 Society advocate for better resources and support

Your voice directly contributes to improving care, guiding future research, and strengthening our global SETBP1 community.

Take the Survey
👉 SETBP1 Parent Communication & Speech Therapy Survey

Thank you for taking the time to share your family’s experience. Together, we are building a clearer, more informed picture of communication in SETBP1 and helping shape a brighter future for all of our families.

Your experiences help shape the future of SETBP1 research, clinical guidance, and family support and we are deeply grateful for every response.