Events

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  • 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 downtown stops like the Willis Tower, Shedd Aquarium, or the Millennium Park Chicago Bean to suburban stops like Brookfield Zoo, Morton Arboretum, or the premier […]

  • 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 takes place June 22, 2025 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! KdVSF Connect […]

  • 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, 09/14/2025 at 8 pm EST

  • 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 Hutchinson - additional data and research progress Dr. Anna Pfalzer - research insights and next steps This event is for all who participated in research […]

  • 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 at 8 pm EST

  • 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, 01/11/2026 at 8 pm EST

  • 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 at 8 pm EST

  • FIRST Summit 2027 Planning Session!

    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 […]