The International Consortium on EDS and Related Disorders

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.

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The steering committee oversees and coordinates the efforts of the International Consortium. The type-specific committees focus on the unique challenges of each type that make up the Ehlers-Danlos syndromes.

Working Groups

The working groups were formed to investigate the co-morbid diagnoses and symptoms associated with the Ehlers-Danlos syndromes, principally with the hypermobility type. The groups have been tasked to identify the links between these co-morbidities and the Ehlers-Danlos syndromes and hypermobility spectrum disorders, to identify research pathways, and to provide guidance for the best clinical strategies to care for people with each of the co-morbidities.


  • Najla Alsiri
  • Raj Anand
  • Derik Anderson
  • Paldeep Singh Atwal
  • Seth Banks
  • Katrina Barton
  • Kimberly Carter
  • Katie Cleary
  • Subinoy Das
  • Elisabeth Davidson
  • Anne De Paepe
  • Shanda Dorff
  • Jefferson Doyle
  • John Fagan
  • Irman Forghani
  • Jen Glayzer
  • Stephen Grill
  • Kathleen Hopkins
  • Jonathan Kost, MD
  • Josee Larochelle
  • Catherine Lewan
  • Matthew
  • Nathan Mayberry
  • Abbie Morales
  • Siobhan O’Neill
  • Stephen Porges
  • Carol Rivas
  • Andrea Esperanza Rodriguez
  • Carey Ronspies
  • Peter Rowe
  • David Saperstein
  • Kimberly Saunders
  • Jennifer Schoon
  • Andrew Sharobeem
  • Patricia Stott
  • Tim Van Damme
  • Hugo Villarroel-Ábrego