The International Consortium on EDS and HSD

International Consortium Logo

The International Consortium was created in 2014 by what was then EDNF and EDS UK, in preparation for the reclassification for EDS, and to create management and care guidelines for the first time, which led to the 2017 publication in the American Journal of Medical Genetics. It was during that work that the need for a global group to facilitate the work of this independent group of experts was needed and this was one of the driving forces behind setting up the Society. Experts were invited to join based on their clinical or research experience 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. These experts are organized into committees and groups based on medical specialty and research interests, and coordinated by the Steering Committee. 

The International Consortium is an independent working 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.

Structure and Membership

Experts are organized into committees and groups based on medical specialty and research interests, and coordinated by the Steering Committee. The Society is dedicated to always bringing in the community voice to all we do, and there is a patient expert sitting on every group and committee of the consortium. 

The steering committee is made up of the chairs of the committees which represent the different types of EDS, the CEO of the Society, and it is led by the CSO of the society, currently Prof Fransiska Malfait. Membership has doubled in size since 2014. Membership now runs for a period of two years and throughout the year people can apply to join any of the groups. The steering committee invites the chairs based on their experience and contribution both clinically and/ or academically. The chairs themselves decide on members of their groups or committees.

Become part of The International Consortium

Become a Patient Expert – The patient expert panel is made up of the patient representatives that sit on the EDS and HSD International Consortium; there is one expert per group or committee.

Committees

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. 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.

REVIEW MEMBERS

  • 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