Our
Mission

From rare to remarkable: moving toward a cure for kEDS.

Move for kEDS was created out of a deep need: the search for answers, treatments, and ultimately a cure for Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS). Born from the personal journey of navigating this ultra-rare condition, our foundation exists to bring together those affected, amplify their voices, and ensure they are not alone.

Our mission is to accelerate the path toward effective treatments and a cure for Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS). We are committed to advancing scientific research, supporting innovative studies, and exploring drug repurposing opportunities to bring hope and real solutions to those living with this ultra-rare condition. Through collaboration, advocacy, and determination, Move for kEDS strives to transform the future of kEDS from uncertainty to possibility.

We hope to shine a light on kEDS by sparking interest in the scientific and medical community, encouraging groundbreaking research, and exploring innovative approaches such as drug repurposing. We strive to unite families, researchers, and industry partners around a common goal: to transform the future of kEDS from uncertainty into possibility.

At its core, Move for kEDS stands for hope in action—moving science forward, moving hearts together, and moving toward a future where every person with kEDS has the chance to thrive.