Come learn about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and Koolen-de Vries Syndrome dad Russ Zwiener. The discussion will be led by Kaci Fisher, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom. This webinar is being co-hosted with DEE-P Connections. DEE-P Connections is dedicated to […]

Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place March 11, 2023 at 12 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the KdVS community to join […]

Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place April 23, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great […]

Join the KdVSF Foundation to discuss Koolen-de Vries Syndrome and speech challenges. The event takes place May 21, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics […]

Are you attending the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 10, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect events are […]

Are you attending the Koolen-de Vries Syndrome Foundation's Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 11, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your timezone HERE! KdVSF Connect events are a […]

Join the KdVS Foundation for a Meet & Greet open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. We look forward to connecting with you! Sunday, 10/22/2023 at 8 pm EST Thursday, 2/3/2024 at 8 pm EST Saturday, 5/18/2024 at 12 pm EST […]

Join the KdVS Foundation for a Newly Diagnosed Families meeting open to any KdVS families diagnosed within the past 3 years)! We look forward to connecting and supporting you. Sunday, 11/5/2023 at 8 pm EST Tuesday, 3/12/2024 at 8 pm EST

Join the KdVS Foundation for a Caregiver Emotional Support meeting open to parents and caregivers of individuals diagnosed with KdVS! We look forward to connecting and supporting you. Sunday, 1/21/2024 at 8 pm EST Thursday, 4/11/2024 at 8 pm EST

Join Chief Scientific Officer Dr. Anna Pfalzer to hear about the UCLA CHAMPION Study to learn more about this research opportunity. Register here.     UCLA CHAMPION STUDY (CHROMATINOPATHIES AND AUTISM: MOTOR PHENOTYPING AND INDICATORS OF NEURODEVELOPMENT) This study is being conducted both in-person at UCLA in Los Angeles and virtually. Eligible children anywhere in […]