Study Opportunity with the COMBINEDBrain Team

Calling all Kool Adults, Caregivers, Teachers and Healthcare providers! We’re asking for members of our community to meet with our friends over at Medical College of Wisconsin (MCW) who has partnered with COMBINEDBrain for a research study to better understand the needs of Koolen de Vries syndrome families. By sharing your story for about 60-90 minutes, you’ll help researchers determine what matters most to the Koolen de Vries syndrome community. Together, with input from patients, caregivers and other healthcare providers, we hope to inform future clinical trial outcome measurements and improve health care management of individuals with Koolen de Vries syndrome. Please select the file that fits with your role with KdVS best!