Loading Events

« All Events

2021 KdVS Patient Advocacy Summit

July 15 - July 18

KdVS 2021 Patient Advocacy Summit Logo

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 and in 2021, we are excited to be visiting Orlando, Florida!

This event promises to be exciting! The venue is beautiful and the speaker line up will be top-notch! Prepare for a KOOL experience with Koolen-de Vries Syndrome Foundation and the exceptional KdVS community. See you in Orlando!

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?
  • When can I reserve my room?
  • How much are rooms?
  • Where can I find out more information about the hotel?
  • Will there be childcare?
  • How much will registration be?
  • What is the schedule?
  • Where should I fly into?

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 15
July 18


Koolen-de Vries Syndrome Foundation


Renaissance Orlando at Seaworld, Orlando, Florida
6677 Sea Harbor Drive
Orlando, FL 32821 United States
+ Google Map