Ehlers-Danlos Syndrome


The Gates Center, Children's Hospital Colorado and the CU School of Medicine have joined together 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’s 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 Hospital Colorado, and Dennis Roop, PhD, professor of dermatology and director of the Gates Center, are building a comprehensive center offering coordinated patient care and leading the development of future treatments. 

The research program at the Gates Center is led by Dr. Roop in partnership with Dr. Ganna Bilousova, co-director of the EDS research program, and Dr. Igor Kogut, 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,” said Dr. Roop.

The clinical program will create a multidisciplinary clinic for EDS patients, led by Dr. Elias in close collaboration with Dr. Kourtney Santucci, EDS clinical medical director, and support 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 Dr. Elias.

For clinical inquiries, please see here and/or contact the Children's Hospital Colorado Special Care Clinic at 720 777-6739.