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.
Be sure to join us on social media July 17 to let everyone know about Koolen-de Vries Syndrome and what they can do to help. Include #KdVS and #KdVSAwareness on all your postings!
Support the cause with KdVS apparel and merchandise, including merchandise just for KdVS Awareness day. Old Awareness Day merchandise is on sale and new Awareness Day shirts are currently being ordered. Click here to start shopping!
Support KdVS Awareness Day by adding a special banner to your social media profile pictures! Click HERE to choose your frame! Follow the link to choose from even more options!
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!