Ehlers-Danlos Syndrome

Note: For clinical inquiries and patient information, please visit the Special Care Clinic, which serves both children and adults, at Children's Colorado Hospital or call 720-777-6739. 

Gates Institute, Children's Hospital Colorado, and the CU School of Medicine have joined forces to elevate our national leadership in research, innovation, and care for Ehlers-Danlos Syndrome (EDS), a collection of difficult-to-treat and debilitating connective tissue disorders.

By creating an Ehlers-Danlos Syndrome Center of Excellence on campus, we are together addressing a critical national need for patient-centered, coordinated EDS care today, while fostering leading-edge research into novel therapeutics for new, highly effective treatments tomorrow.

EDS’ various forms attack the bonds that sustain healthy joints and skin, leading to sometimes lifelong struggles with multiple skin wounds, damaged joints and malfunctioning vertebrae, among other issues. The inherited condition affects the proteins that are integral parts of healthy connecting tissue. 

Philanthropic and institutional support made possible the establishment of a robust research and clinical program focused on EDS in early 2019. 

Ellen Roy Elias, MD, professor of pediatrics and medical director of the Special Care Clinic at Children’s Colorado, and Dennis Roop, PhD, professor of dermatology and associate director of Gates Institute, are building a comprehensive center offering coordinated patient care and leading the development of future treatments. 

The research program at Gates Institute is led by Roop in partnership with Ganna Bilousova, PhD, co-director of the EDS research program, and Igor Kogut, PhD, associate director of the EDS research program. “By establishing a translational research program, we intend to maintain our position at the leading edge of EDS care by driving innovation and developing treatments of the future,” Roop said.

The clinical program includes a multidisciplinary clinic for EDS patients, led by Elias in close collaboration with Kourtney Santucci, MD, EDS clinical medical director, and supports EDS education initiatives across the lifespan.

"Building a multidisciplinary EDS clinic will improve our ability to provide world-class care, by bringing together the right team at the right time to determine the best treatment plan possible," said Elias.