Ehlers-Danlos Collaborative Puts Patients First to Advance EDS/HSD Diagnosis, Management, & Care

EDS Comorbidity Coalition to create a global resource for practical guidance in the assessment and management of all types of Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), their related symptoms, and associated conditions.

AUGUST 22, 2018, BALTIMORE, MD — Thanks to the generosity of a major donor, The EDS Comorbidity Coalition—a partnership established in 2016 of medical and patient experts and organizations, including The Ehlers-Danlos Society, the Chiari and Syringomyelia Foundation, Dysautonomia International, Spinal CSF Leak Foundation, and the Mastocytosis Society—will extend their partnership, to complete their comprehensive endeavor to develop a global resource for practical guidance in the assessment and management of all types of EDS, HSD, their related symptoms, and associated conditions.

“The EDS Comorbidity Coalition hopes to produce this desperately needed resource for health professionals to provide guidance protocols for the diagnosis and coordination of care for people living with all types of EDS and the symptoms and associated conditions that can arise—worldwide,” states Lara Bloom, The Ehlers-Danlos Society’s International Executive Director.

“Ultimately, we want to help all health professionals from different specialties understand how to recognize and support people with all types of EDS and HSD, using the new diagnostic criteria, and manage the myriad associated symptoms and related disorders,” adds The Ehlers-Danlos Society’s Education Director, Dr. Alan Hakim.

“Also, in keeping with our global mandate, final resources created by the EDS Comorbidity Coalition will be translated from English into other languages including French, Spanish, Italian, German, Dutch, Arabic, Japanese, Chinese, and Danish,” continues Dr. Hakim.

PATIENTS AT THE HEART OF A POWERFUL OF PARTNERSHIP

“This is a very exciting time for EDS/HSD research. Patients are at the heart of our work, ensuring that there is nothing about us, without us,” states Bloom. “At the same time, the power of the partnership between The Ehlers-Danlos Society, The International Ehlers-Danlos Consortium, the vEDS Collaborative, and each of member of the EDS Comorbidity Coalition, ensures that medical professionals will not only have access to the latest advancements in research, management, and care for EDS/ HSD, but also any related symptoms or associated conditions.”

ABOUT THE EDS COMORBIDITY COALITION

The EDS Comorbidity Coalition was founded by The Ehlers-Danlos Society in association with the Ehlers-Danlos International Consortium, the Chiari and Syringomyelia Foundation, Dysautonomia International, Spinal CSF Leak Foundation, and the Mastocytosis Society to examine the complex interrelationship between the Ehlers-Danlos syndromes and various comorbidities, identify gaps in research, and establish research priorities for comparative research efforts. Initially funded by a prestigious PCORI grant, the Coalition’s collaborative approach ensures the full participation of a wide range of stakeholders—including researchers, clinicians, patients, and organizational staff.

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