Join Summit Co-Chairs Katie Maher & Tony Pechek to dive into the feedback we received from the 2025 KdVSF PAS. Once we analyze and discuss what participants had to say, then […]

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, […]

Our official second patient day for Kool Klinic! Read more about our inaugural Kool Klinic, dates patients will be seen and how to get on our patient schedule: HERE

Koolen-de Vries Syndrome Awareness Day is observed annually on July 17. The goal is to raise awareness for Koolen-de Vries Syndrome (KdVS) and to bring people together across the globe […]

Our official third patient day for Kool Klinic! Read more about our inaugural Kool Klinic, dates patients will be seen and how to get on our patient schedule: HERE

Our official fourth patient day for Kool Klinic! Read more about our inaugural Kool Klinic, dates patients will be seen and how to get on our patient schedule: HERE

Our official fourth patient day for Kool Klinic! Read more about our inaugural Kool Klinic, dates patients will be seen and how to get on our patient schedule: HERE