The Community Coalition
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 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.
Who We are
The Community Coalition brings together advocates, patient representatives, organization staff, clinicians, and researchers from:
- The International Consortium on EDS and HSD
- Bobby Jones CSF Chiari and Syringomyelia Foundation
- Dysautonomia International
- Spinal CSF Leak Foundation
- The Kennedy Forum
- Penn State University
- The Pain Community
- ME Action
- The Mast Cell Disease Society
- TCAPP – The Coalition Against Pediatric Pain, and
- Breaking Down Barriers Initiative
In 2018 the group worked on developing research priorities for people with EDS and HSD and chose three to take forward. These related to:
- The effectiveness of local anesthetic
- The impact sex hormones have on symptoms in HSD and EDS
- Vagus nerve stimulation for gastrointestinal function
The team that took on the local anesthetic (LA) work has published a paper that looked at the response to LA in people with EDS versus people without EDS. The paper can be read here.
It showed that 88% of people with EDS and 33% of those without EDS reported inadequate response to LAs.
Since then a study, led by Dr. Satish Raj, University of Calgary, Canada, and, a member of the coalition, has begun. It is looking at the response to different LAs in individuals with EDS. The study started at The Ehlers-Danlos Society Global Learning Conference, Nashville 2019, and is looking for additional funding to recruit more people to the study.
The team looking at the effect of hormones on symptoms is currently seeking funding to start this study. Studies by groups outside The International Consortium on EDS and HSD, have commenced looking at vagal nerve stimulation.
In 2019 the Coalition was able to continue its work through a generous and anonymous donation from an individual donor. The Coalition decided that its focus for 2019/20 would be the development of information guides. Twelve areas were chosen by the group. Two of four meetings have taken place over the end of 2019 and early 2020 to discuss the first 6 topics that are currently being prepared as information guides. These topics are Emergency Room Attendance, Fatigue, Headache, Pain Management, and Travel.
In addition, the Coalition has identified several areas where there is a need to publish formal peer-reviewed ‘Accredited Guidelines’ that would be recognized by professionals and professional organizations internationally. The first three of these that The Ehlers-Danlos Society is leading on are:
- Diagnostic Pathways for Ehlers-Danlos syndromes
- Pregnancy in EDS and HSD
- Gastrointestinal disorders in EDS and HSD
The Ehlers-Danlos Society is now working with international groups to identify how best to take these subjects forward with organizations that support the accreditation process, which of itself is a rigorous and detailed review of the literature and best-practice guidance. The Society is also seeking funding for this program of work that will likely take 12-18 months to complete over 2020/21.
Despite the global COVID-19 pandemic changing some targets and objectives for the Coalition in 2020/2021, we continue to meet to discuss needs as they arise.
In 2020 the Coalition worked as a focus group, meeting to discuss the migration of the EDS and HSD Global Registry from the Peer platform to LunaDNA, and the launch of the new Global EDS and HSD Registry and Repository for research for our community’s future.
Current scope of work
The Community Coalition serves as a focus group to The Society on whatever issues that may arise. As an organization, it is important for us to always ensure we are meeting the needs of our community, and this fantastic group of people helps us to do this. We are grateful for the expertise, collaboration, and kindness that all our equal stakeholders bring to the table.
If you would like to be considered for future involvement and membership or would like to discuss your organization’s objectives, please consider joining our Breaking Down Barriers Initiative here.