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 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.
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.
- Allergy and Immunology Working Group
- Allied Health Working Group
- Autonomic Working Group
- Diet and Nutrition Working Group
- Gastrointestinal Working Group
- Hematology Working Group
- Neurology Working Group
- Oral Manifestations and Ear, Nose, and Throat Working Group
- Orthopedics Working Group
- Pain Management Working Group
- Paediatric Working Group
- Pelvic Disorders Working Group
- Psychiatric and Psychological Aspects Working Group
- Skin Working Group
- Classical EDS Group
- Hypermobile EDS and Hypermobility Spectrum Disorders Group
- Vascular Group
- Rarer Types Group