With the help of PCORI, the Ehlers-Danlos Society will bring together the Ehlers-Danlos Consortium and organizations that represent different co-morbidities associated with the Ehlers-Danlos syndromes. Our collaborating organizations include the Chiari and Syringomyelia Foundation, Dysautonomia International, and the American Academy of Pain Management. Other organizations may be added to our collaboration prior to the beginning of the project. Various levels of stakeholders—including researchers, clinicians, patients, and organizational staff—will be represented in this coalition. Together, this coalition will examine the complex interrelationship between the Ehlers-Danlos syndromes and various co-morbidities, identify gaps in research, and establish research priorities for comparative research efforts.
A series of three meetings will occur throughout the project period. For the convenience of all participants, these meetings will coincide with various medical conferences. The first meeting will be held at the American Society of Human Genetics Conference, which will meet in Orlando, Florida, October 17 through 21, 2017. The second meeting will take place at the American College of Medical Genetics and Genomics Conference in Charlotte, North Carolina, in March 2018. The third meeting will coincide with our annual Ehlers-Danlos Society Learning Conference tentatively set in the Baltimore, Maryland, area in July 2018. Between these meetings, members of the coalition will continue their collaboration through electronic communications and regular conference calls. The results of the coalition’s collaboration will be presented at the Ehlers-Danlos International Symposium in September 2018.