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 live through Zoom or on Facebook Live. We are very fortunate to have involved and personable researchers that care about KdVS research and our community. […]

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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 the rare disease community while sharing information about KdVS and a link to our new video (https://youtu.be/6mqYyJcQY50). We had a wonderful time attending the 2019 […]

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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 2015, this grant program directs financial support to RARE Foundation Alliance partner organizations and patient advocacy groups to provide education, resources and support to rare […]

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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 family is doing an amazing job working on extensive plans for the event! This year we’re expanding the conference to include two extra (but optional) […]

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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.

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31 Jan

Homepage Gallery Images

*********************DO NOT REMOVE THIS TEXT*********************** Images to be used in the homepage gallery need to be attached through this page. What does that mean? It means that you need to use the “Add Media” button to the upper left, and upload the image through this page.  Currently the gallery will hold 5 images. Please remove […]

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