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 Supporting Families With Koolen-de Vries Syndrome 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!