October is Cybersecurity Awareness Month — a perfect time to pause and make sure we’re all staying safe on the internet. The online world helps our Koolen-de Vries Syndrome (KdVS) […]
Nothing quite prepares you for the moment you’re told you and your children have a rare genetic syndrome. Koolen-de Vries syndrome wasn’t something I had ever heard of before, let […]
The time is here! The Koolen de Vries Patient Advocacy Summit will be held in Chicago, IL, USA from July 16th – 18th, 2025. There are so many sessions to […]
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 […]
