The Community Coalition

The Community Coalition (formally the Comorbidity Coalition) was founded in October 2017, with a one-year “Pipeline to Proposal” grant awarded by the Patient-Centred Outcomes Research Institute (PCORI). 

The Ehlers-Danlos Society brought together patients and organization staff, and clinicians and researchers from:

  • International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders
  • Chiari and Syringomyelia Foundation
  • Dysautonomia International
  • Spinal CSF Leak Foundation
  • The Kennedy Forum
  • Penn State University
  • The Pain Community 
  • ME Action
  • Mastocytosis Society, and
  • The Coalition Against Pediatric Pain

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 Consortium 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 is a huge asset to all the communities it represents because it is made up of many stakeholder groups of both patients, and lay and professional members.

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.

Lara Bloom
Co-lead and EDS organizational representative
Alan Hakim, MA, FRCP
Co-Lead and EDS organizational representative
Clair Francomano, MD
EDS professional representative
Shani Weber
EDS patient representative
Kara Kukfa
The Kennedy Forum organizational contact and vEDS patient representative
Dr. Melissa Russo
Obstetrics and Gynecology professional representative
Dr. Rebecca Bascom
Penn State representative and organization committee member
Nancy Feracco
Bobby Jones CSF patient representative
Dr. Jane Schubart
Penn State representative and organization committee member
Dr. Peter Byers
Molecular professional representative
Courtney Rabb
The Mast Cell Disease Society, Inc. contact and patient representative
Larry Constant
Rare type patient representative
Dr. Laura Pace
GI professional representative
Courtney O'Brien
Patient representative
Jan Hempstead
The Mast Cell Disease Society, Inc. contact and patient representative
Noni Dickerson
EDS Patient Representative
Prof. Petra Klinge
CSF professional representative
Dr. Aurora Richards-Stipnieks
TCAPP organizational contact
Alan Pocinki, MD, FACP
Fatigue professional representative
Francie Fitzgerald
Patient representative
Dr. Anne Maitland
Mastocytosis Society organizational contact and professional representative
Dorothy Poppe
Bobby Jones CSF patient representative
Satish R. Raj, MD, MSCI, FRCPC
Dysautonomia International expert representative
Maggie Buckley
Patient representative
Prof. Lauren Stiles
Dysautonomia International organizational contact and patient representative