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September 2018

2018 “Tri” to be Kool Virtual Triathlon

September 17, 2018 - October 17, 2018

** T-shirts are being ordered 10/2/2018. You are welcome to join our event between 10/2 and 10/17, but unfortunately, we can not guarantee extra t-shirts will be available.** Join Koolen-de Vries Syndrome Foundation in our 2018 “Tri” to be Kool Virtual Triathlon! This is our third annual Triathlon and this year all proceeds from the event will benefit KdVS research. Earlier in 2018, we raised $50,000 that has been sent to Dr. Koolen and Dr. de Vries for an ongoing…

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February 2019

Rare Disease Day

February 28
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June 2019

2019 KdVS Patient Advocacy Summit

June 27 - June 29
Newpark Resort, Park City, Utah, 1476 Newpark Boulevard
Park City, UT 84098 United States
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Free – $50
KdVS 2019 Summit Event Page Cover Photo

We are pleased to present the 2019 KdVS Patient Advocacy Summit in Park City, Utah on June 27-29, 2019. Learn from top scientists, meet other families and Kool kids and enjoy the beautiful Utah mountains!

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July 2019

KdVS Awareness Day

July 17
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