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Virtual Event
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2021 VIRTUAL KdVS Patient Advocacy Summit

July 14 - July 16

Virtual Event

Click on the registration button above to browse the agenda and speakers and to register!

What is the Patient Advocacy Summit?

In 2017, Koolen-de Vries Syndrome Foundation hosted the first KdVS Patient Advocacy Summit in Memphis, TN. The goal of the event was to bring families and doctors together to network, learn and socialize. The Summit, which is held every two years, was held in Park City, Utah in 2019. Due to Covid, in 2021 we are hosting a virtual event!!

This event promises to be exciting! Prepare for a KOOL experience with Koolen-de Vries Syndrome Foundation and the exceptional KdVS community. Speakers, live Q&A sessions and networking opportunities are all included in the schedule.

Summit Countdown

What's next?!

Everyone's excited! Everyone has questions! Get answers to the questions below and MORE by downloading our most up-to-date Frequently Asked Questions.

  • When can I register for the Patient Advocacy Summit?
  • How much will registration be?
  • What is the schedule?
  • Will recordings be available to view?

Join the conversation

Continue to check the website for updates over the upcoming months but also join us on Facebook! Connect with others interested in attending, ask questions and get excited!


July 14
July 16


Koolen-de Vries Syndrome Foundation