Uncategorized Archives - Koolen-de Vries Syndrome Foundation

15 Apr

Koolen-de Vries Syndrome Foundation and Children’s Hospital Colorado Launch First U.S. Multidisciplinary Clinic, titled the Kool Klinic

WILMINGTON, NC – The Koolen-de Vries Syndrome Foundation (KdVSF) is proud to announce the official opening of its first-ever multidisciplinary clinic, called the Kool Klinic at Children’s Hospital Colorado in […]

6 Oct

Keeping Our KdVS Community Safe Online

October is Cybersecurity Awareness Month — a perfect time to pause and make sure we’re all staying safe on the internet. The online world helps our Koolen-de Vries Syndrome (KdVS) […]

3 Apr

Matt Holcombe

Matt Holcombe lives in Colorado Springs and has been part of the KdVS Community since 2017. His son was diagnosed with Koolen-de Vries Syndrome at age seven and is now a Kool […]

2 Dec

KdVS Foundation hosts webinar with Dr. Kasri

On Thursday, October 29, we hosted a conversation with Dr. Nael Nadif Kasri to discuss the latest research on stem cells and drug therapy. Over 100 people attended the webinar […]

1 Mar

A View into Koolen-de Vries Syndrome

24 Sep

KdVS Foundation attends Global Genes Summit

Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in […]

3 Mar

2019 RARE Patient Impact Grant

The Koolen-de Vries Syndrome Foundation is proud to have been selected from among some 200 other applicants to receive the 2019 RARE Patient Impact Grant from Global Genes. Launched in […]

26 Mar

2019 Patient Advocacy Summit

KdVS Foundation is excited to announce that our 2019 KdVS Patient Advocacy Summit will be held in beautiful PARK CITY, UTAH, JUNE 27TH-29TH at the Newpark Resort! Our wonderful host […]

8 Aug

Following her Heart

With 50-50 odds that her child may also be diagnosed with Koolen-de Vries Syndrome, England’s Lisa Collins pursued her dream of being a mom.

31 Jan

Homepage Gallery Images

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