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Today

  • Summit Registration Chat

    Join our chat from 7:00-8:00pm EST to chat about Registration for KdVSF Summit 2025!

  • Chicago Concierge

    Join our KdVS Chicago-based family, The Mahers, on May 26th at 6PM CST virtually for a deep dive on Chicago must-sees while you’re at the summit this summer. From incredible […]

  • KdVSF Connect – Get Excited for Summit!

    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 […]

  • KdVSF Connect – Newly Diagnosed Families

    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, […]

  • KdVSF Presents: Natural History Study Updates

    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 […]

  • KdVSF Connect – All About School

    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

  • KdVSF Connect – Caregiver Emotional Support and Chat

    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 […]

  • KdVSF Connect – Newly Diagnosed Families

    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, […]

  • KdVSF Connect – All About Speech

    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

  • KdVSF Connect – Caregiver Emotional Support and Chat

    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 […]