As an organization, our goals are world-wide awareness—and a better quality of life for all who have Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Collaborative international advocacy and research are vital parts of our mission, ensuring we have representation from different organizations and community voices to support and help our global community.
The International Consortium on EDS and HSD
The International Consortium was created following the efforts that resulted in the 2017 diagnostic criteria and management and care guidelines.
A group formed who are committed to progress, research, and collaboration in the field, to work on the many challenges and research questions faced by families, clinicians, and social agencies. The clinicians, scientists, and patient experts are organized into committees based on medical specialty and research interests, and coordinated by the Steering Committee.
The International Consortium is an independent group of medical professionals and experts. The consortium’s administrative and event-planning needs are facilitated by The Ehlers-Danlos Society, but all work and opinions are independent and come solely from the consortium members.
The Community Coalition
The Community Coalition consists of stakeholder groups of patients and professionals, allowing international collaboration to increase the quality of life for individuals living with these conditions. The Coalition was originally launched as The Comorbidity Coalition in 2017 with a one-year “Pipeline to Proposal” grant awarded by the Patient-Centred Outcomes Research Institute (PCORI).
In 2021, The Ehlers-Danlos Society renamed the group to ‘The Community Coalition’ and expanded its scope to a focus group and working group, to ensure we cover all issues and barriers that our community may face. We continue to introduce new members that will represent our diverse and growing community, who have experience with the challenges that could be experienced by those impacted by EDS and HSD.
The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self or, more typically, a parent on a child. We note that Ehlers-Danlos syndromes are being listed as a condition to be concerned about, in situations where factitious injury or illness is suspected. The Ehlers-Danlos Society would like to understand why this is happening, and what role non-profit organizations and charities can do to support better understanding in our communities, among clinicians, and social services.
The AHEAD Coalition – Action for Children & Young People with EDS & HSD Accurate Diagnosis includes representatives from groups and organizations involved in the welfare of children and young people and their families. In addition, the coalition will invite specific leaders and organizations to join and advise on projects established by the coalition.
Hypermobility Biology Network
The Ehlers-Danlos Society expanded its international research network of leading physicians, geneticists, and other health professionals, devoted to understanding the molecular biology and underlying genetic basis for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).
The Hypermobility Biology Network will aim to establish a platform to encourage collaboration, networking, and discussion of hEDS and HSD, within the medical and scientific community.