Join the KdVS Foundation for a meeting all about speech, open to any KdVS families! We look forward to connecting and supporting you. Sunday, 02/08/2026 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, 03/08/2026 at 8 pm EST

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 best summit yet! We'll be discussing meeting cadence over the next 17 months, tasks, and we'll be collecting ideas and thoughts from our summit committee […]

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 you. Sunday, 04/12/2026 at 8 pm EST

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: HERE

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 we'll begin making some decisions about what we'll carry into this next summit in Colorado. We'll also begin delegating tasks and responsibilities to our lovely […]

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, 05/17/2026 at 8 pm EST

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 to show support for those who are impacted by this rare genetic syndrome. Why the 17th? Because the microdeletion or the KANSL1 mutation is located on […]

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