Upcoming 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.

Past Events

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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2015 – April 17-19, Gold Coast, Queensland

In April many Australian KdVS families came together for a fun filled weekend on the Gold Coast. Queensland. The Gold Coast is situated in South-East Queensland and was easy for families to access with 2 major airports at Brisbane and Coolangatta. A total of 12 families (45 people) attended the fun 3 days and there was many new friendships forged and reunited. The weekend began with the Friday evening meet and greet, poolside at Paradise Resort which was a never ending source of entertainment for our kids. Not only was the venue perfect for our KdVS kids, but a great environment for their siblings. We all got to know each other over a casual dinner and a few refreshments.

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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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