Join us for a virtual Natural History Study Update meeting on Tuesday, September 30 at 11am EST. Hear directly from KdVS experts: Dr. Nicolo Pini - EEG study updates Meagan […]

Join the KdVS Foundation for a meeting all about school, open to any KdVS families! We look forward to connecting and supporting you. Sunday, 10/12/2025 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, 11/09/2024 […]

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, […]

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 […]

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 […]