Navigating Life with Koolen-de Vries Syndrome

Ethan Deremer is 23 years old and was diagnosed with Koolen-de Vries Syndrome in 2014. He recently submitted a short essay and was featured on the Our Odyssey website. Our Odyssey connects young adults who are impacted by a rare or chronic conditions with social and emotional support in the hope of improving their quality of life.

Read Ethan’s article here.

To read more about Our Odyssey or get involved, visit their website.

Subscribe to our emails! Learn about what's going on in the world of KdVS and stay informed.