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, 03/08/2026 […]

Join Summit Co-Chairs Katie Maher & Tony Pechek for a brief informational meeting about how you can get involved in making the 2027 KdVSF PAS in Denver the biggest and […]

Join the KdVS Foundation for a meeting all about puberty, open to KdVS families looking for information or to provide support to others! We look forward to connecting and supporting […]

A day to celebrate our first-ever Kool Klinic officially opening! Read more about our inaugural Kool Klinic, dates patients will be seen and how to get on our patient schedule: […]

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