KdVS Awareness Day

Koolen-de Vries Syndrome Awareness Day is observed annually on July 17. The goal is to raise awareness for Koolen-de Vries Syndrome (KdVS) and to bring people together across the globe to show support for those who are impacted by this rare genetic syndrome. Why the 17th? Because the microdeletion or the KANSL1 mutation is located on the chromosome 17.

Many people living with KdVS have medical and educational issues including but not limited to developmental delays, heart conditions and epilepsy. Early diagnosis and intervention are key, and only through awareness can we reach more families and individuals impacted by KdVS and ensure they have the information and tools they need.

Fundraisers and other events are held around the world to celebrate this day. Join us on July 17 to spread the word about KdVS. Contact the Koolen-de Vries Syndrome Foundation Fundraising Committee for more information on how you can get involved by filling out the form below.

Be sure to join us on social media July 17 to let everyone know about KdVS and what they can do to help. Include #KdVS and #KdVSAwareness on all your postings!


Special KdVS Awareness Day store offerings!

Support the cause with KdVS apparel and merchandise, including new special merchandise just for KdVS Awareness day. Click here to start shopping!

Show your support for KdVS with a special Facebook or Twitter profile picture!

Support KdVS Awareness Day by adding a special banner to your social media profile pictures! You can pick from the options below. Just click on the image you want to add and you’ll be taken to the right picture generator.

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2017 KdVS Awareness Day Press Release

Have some ideas to help raise awareness? Visit the contact page and send us a note to get involved!