Our very own Board President Ashley Point was featured on an episode of the podcast “Wait, How Do You Spell That? A Rare Disease Podcast”. In the episode, Ashley shares […]
Meet Laura Egan, the WINNER in the Westmeath independent community and sports awards for the 2024 Family Carer of the Year award. When her daughter Alanna was diagnosed with Koolen-de […]
Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit in Chicago? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions! The event […]
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, […]
Join the KdVS Foundation for a Kool Meet Up open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. […]
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, 03/09/2025 […]
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, […]
Join the KdVS Foundation for a Kool Meet Up open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. […]
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, 11/10/2024 […]
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, […]
