KDVS Foundation Enriching lives through education, awareness and research. KDVS Foundation Enriching lives through education, awareness and research.

What is Koolen-de Vries Syndrome?

Koolen-de Vries Syndrome is a genetic syndrome caused by a deletion on the 17th chromosome at 17q21.31 or by a mutation of the KANSL1 gene. Find out more about the syndrome.

MORE

Spinal Deformities Study

Looking for individuals to participate in a spinal deformities study with Dr. Koolen. This is a questionnaire open to those with and without spinal issues (such as scoliosis).

MORE

2021 KDVS Patient Advocacy Summit

Join us July 15-18, 2021 in Orlando, Florida for the Koolen-de Vries Syndrome Patient Advocacy Summit. Hotel rooms can be booked now and Summit registration coming in October 2020!

MORE

Want to see more?

Visit our What is KdVS page for more videos!

Subscribe to our emails

* indicates required


OUR LATEST

KDVS NEWS

By Alayna

0 Comments

Fall/Winter 2020 Newsletter

The Fall/Winter 2020 Koolen-de Vries Syndrome Foundation newsletter was emailed on December 14, 2020. Did you miss it? Not to worry! Features include: Meet our new Board President Feature article on Constipation from Medical Advisory Board Member and Kool Dad, Dr. Russell Zwiener Board Member Spotlight Kool Kampaign update Patient Advocacy Summit update

READ MORE

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. […]

READ MORE

By Alayna

0 Comments

By Alayna

0 Comments

Koolen-de Vries Syndrome Foundation Announces a New President of the Board of Directors

September 3, 2020 Contacts: Ashley Point, 704/342-1445, ashley@kdvsfoundation.org Patty Tiberg, 817/905-1360, patty@kdvsfoundation.org Wilmington, NC-The Koolen-de Vries Syndrome Foundation (KdVSF), whose mission is to educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome (KdVS) and their families, announced today the election of Ashley Point to the role […]

READ MORE

Interested in reading more KdVS News?

READ MORE

LEND A HAND

The generous support from our donors helps us find success. Thank you!

DONATE

CHECK OUT OUR UPCOMING EVENTS

15
Jul

2021 KdVS Patient Advocacy Summit 12:00 AM

READ MORE
CONTACT US

Drop Us a Line




Awareness Day

What is KdVS?

Kool Store