Our Mission

We are deeply committed to improving acess to EDS diagnosis and treatment for all members of our community. Ten years ago, Professor Rodney Grahame, remarked that “no other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.” Since then, EDS awareness has dramatically increased, but access to care still lags behind. It takes decades to change the practice of medicine, and we aren't willing to wait that long. That's why we are building a virtual center of excellence to provide care for EDS patients across the United States. We won't be able to provide accessible care for everybody today, but we are building towards a future in which every EDS patient can access quality care that is covered by insurance.