The International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

The International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (IC) was created in 2014 by what was then Ehlers-Danlos National Foundation (EDNF) and The Ehlers-Danlos Support UK (EDS UK), in preparation for the reclassification for the Ehlers-Danlos syndromes (EDS), and to create management and care guidelines for the first time, leading to the 2017 publication in the American Journal of Medical Genetics. It was clear there was a need for a global group to facilitate the work of this independent group of experts, and that need was a driving force in setting up The Ehlers-Danlos Society.

Experts are invited to join the IC based on their clinical or research experience and their commitment to progress, research, and collaboration in working on the many challenges and questions faced by families, clinicians, and social agencies. Consortium members are organized by medical specialty and research interests into committees and groups coordinated by the Steering Committee.

The IC is an independent working group of medical professionals and experts. The IC’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 IC members.

Structure and Membership

Experts are organized into working groups based on medical specialty and research interests and coordinated by the Steering Committee. The Ehlers-Danlos Society is dedicated to bringing the community’s voice into all we do; there is a community expert in every group and committee of the consortium. The Steering Committee consists of the chairs of the working groups that represent the different types of EDS and HSD and The Ehlers-Danlos Society’s Chief Executive Officer, Chief Scientific Officer, Chief Medical Officer, and Chair of The Medical and Scientific Board.

The IC 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. Chairs are invited to serve by the Steering Committee, based on experience and contributions clinical and academic. Each chair decides on the members of their group or committee.

Become part of The International Consortium

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


The steering committee oversees and coordinates the efforts of the International Consortium. 

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.

The type-specific working groups focus on the unique challenges of each type that make up the Ehlers-Danlos syndromes and hypermobility spectrum disorders. 


  • 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
  • Kristen Coletti Giesler
  • 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
  • Elizabeth Kemper
  • Dr. Kaisa Syvaoja
  • Dr Jennifer Robblee
  • Russell Norris
  • Dr Valerie Ferdinand, ND
  • EF Seater
  • Dr Jennifer Bambrough
  • Suzanne Volkman
  • Abi Shrapnell
  • Pauline Slater
  • Medea Karr
  • Chris O’Callaghan
  • Marco Ritelli
  • Nathan Rudin
  • Deepak Sharan
  • Asma Fikree
  • Xavier Jeunemaitre
  • Daniel Greenspan
  • Susan Morris
  • Ozkan Ozdamar
  • Rajiv Chawla
  • Paolo Bolognese
  • Roger Wolman
  • Daniel Manicourt
  • Jeffrey Hooper
  • Dr. Frank Tudini
  • Dr. Ulrike Lepperdinger
  • Dr. Dawn Olsen
  • Dr. Jacques Courseault
  • Dr. Dominique Woods
  • Dr. Rusket Attar
  • Ashley Baker
  • Dominique Samuels
  • Kaliny Christine Trevezani de Souza
  • Priscilla Flores
  • Daun Jeong
  • Kathryn Bacigalupo
  • Jerry Hesch
  • Annecy Houston

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