Upcoming Events

2018 KdVS Social Gathering


Koolen-de Vries Syndrome 2018 Social Gathering

Mark your calendars and save the date! Planning for a social gathering is underway in Omaha, Nebraska from Thursday, July 12 to Saturday, July 14. This event is being hosted and planned by several KdVS families.

Courtesy hotel room blocks have been secured at two places: Homewood Suites and Hampton Inn and Suites, both located in Downtown Omaha adjacent to each other on Cuming Street, from Wednesday, July 11 to Sunday, July 15. Rooms range in price from $109/night to $124/night (plus taxes). Book your room(s) now to secure the amazing room rate. There are a limited amount of rooms available at the discounted rate on a first-come first-serve basis.

Social events will kick off Thursday night with a kid-friendly cocktail event at Hot Shops Art Center, a facility that’s home to over 80 studio artists. This venue is located across the street from the recommended hotels.

Friday’s itinerary includes a day at Omaha’s Henry Doorly Zoo and Aquarium. We have complimentary admission tickets for up to 300 people thanks to a generous donation from the KDVS Foundation. A private auditorium at the zoo will be available from 9am to 5pm for our group!

Saturday there will be a carnival for all the families. More details to be announced soon.

There is a private Facebook group called “2018 KDVS Social Gathering”. Please request to join this group to stay up-to- date on all the details! Hotel details can be found within the Facebook group or by emailing Nicholle.

Are you planning to attend? Sign up HERE!

Event T-shirts have been ordered and can be picked up at the Event!

Questions? Contact Nicholle Reisdorff at nicholle.reisdorff@gmail.com

This event is sponsored by HATCX!

Past Events

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, Tennessee July 13 – 15, 2017
The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in Memphis, TN. The event’s goal is for patients, caregivers and advocates to walk away equipped with information, ideas and goals to help form an action plan for the future. Participate in lectures, Q&A’s, open discussions to learn valuable information and enjoy fun activities bonding with other KdVS families. We have many doctors already prepared to attend this event either as a speaker or as part of our Q&A event. Dr. Koolen and Dr. de Vries are both planning to attend. Please join the Facebook page and we will post updates for this event as they are available.

2016 – July 7-9, Columbus, Ohio

The 2016 Koolen-de Vries Syndrome Gathering will be held in Columbus, Ohio, July 7-9. The gathering will be predominately a social event with lots of time for networking and visiting with other KdVS families.

To assist us with planning, we are asking families to register at EventBrite. If your plans change, your registration can be cancelled at any time.

For details about the event, please join the closed Facebook page by clicking here.

2015 – July 9-11, Asheville, North Carolina

A USA KDVS gathering was held July 11, 2015 in Asheville, North Carolina. Many families arrived a few days early to attend additional fun activities. Ted and Stephanie Needham hosted the gathering and it was clear that they spent a lot of time fundraising and planning to host a huge number of families. Around 65 individuals with KDVS and their families and extended families came together for fellowship, forging new friendships, sharing information, and meeting a number of doctors and specialists. Everyone was honored to have Dr. Koolen and Dr. de Vries travel from the Netherlands to spend a number of days visiting, answering questions and taking lots of pictures!
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2014 – July 24-26, Dallas, Texas

The 2014 Annual KDVS Gathering was held on July 26th and was a great success! A total of 33 Kool Kids and their families made the trip to join their extended KDVS family in Dallas, TX.

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2013 – Indianapolis, Indiana

On August 10, 2013, Indiana was our Gathering place for all KDVS/C17 Families. We hosted events starting on Wednesday prior to the 10th and continued through the following Tuesday.

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