The International Consortium includes clinicians, scientists, and patient experts from around the world who share a devotion to the advancement of clinical and basic research about the genetic and physiological bases of Ehlers-Danlos syndromes and hypermobility spectrum disorders as steps to implement effective diagnosis and treatment.
This network brings members together to work on many challenges and research questions faced by families, clinicians, and social agencies. The clinicians, scientists, and lay experts are organized into committees based on medical specialty and research interests, and coordinated by the Steering Committee.
The consortium was founded at the first EDS symposium in Ghent in 2012 by our medical and scientific board chair, Professor Fransiska Malfait, and her colleagues. It was expanded and formalized through work that led to the 2016 Ehlers-Danlos Society International Consortium Symposium in New York and subsequent publication in The American Journal of Medical Genetics Supplement in March 2017 of consensus documents on classification and management of people with all types of Ehlers-Danlos syndrome. The Ehlers-Danlos Society facilitates and supports the International Consortium’s work.
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.
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.
- Allergy, Immunology & Mast Cell Working Group
- Autonomic Dysfunction, Dysautonomia & Fatigue Working Group
- Beighton Criteria Working Group
- Fatigue Working Group
- Gastroenterology, Urology & Gynecology Working Group
- Hypermobility Spectrum Disorders Group
- Neurology Working Group
- Orthopaedics Working Group
- Pain Management
- Psychiatric and Psychological Aspects Group
- Physiotherapy Working Group