The Ehlers-Danlos Society was approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI) to support a project to develop an Ehlers-Danlos Comorbidity Coalition.
The Ehlers-Danlos Society is using the funds provided through PCORIâ€™s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and other stakeholders who are focused on addressing the common health issues associated with this group of high morbidity, high-disease-burden conditions, leading to the development of a patient-centered research proposal. The coalition will help to develop partnerships, governance infrastructure, channels of communication, and an outreach plan which will form a solid foundation for future collaborative work.
With the help of PCORI, the Ehlers-Danlos Society has brought together the International Consortium on Ehlers-Danlos Syndromes and Related Disorders and organizations that represent different comorbidities associated with the Ehlers-Danlos syndromes. Our collaborating organizations include the Chiari and Syringomyelia Foundation, Dysautonomia International, Spinal CSF Leak Foundation, and the Mastocytosis Society. Various levels of stakeholdersâ€”including researchers, clinicians, patients, and organizational staffâ€”will be represented in this coalition. Together, they 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.
For more information about the PCORI grant, please see our press release here.