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.
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.
- Steering Committee
- Classical EDS Committee
- Hypermobile EDS and Hypermobility Spectrum Disorders Committee
- Vascular Committee
- Rarer Types Committee
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 Working Group
- Gastrointestinal Working Group
- Measuring Joint Hypermobility Working Group
- Neurology Working Group
- Oral and Mandibular Manifestations Working Group
- Orthopaedics Working Group
- Pain Management Working Group
- Paediatric Working Group
- Pelvic Disorders Working Group
- Physiotherapy Working Group
- Psychiatric and Psychological Aspects Working Group
- Skin Working Group
Consisting of leading authorities in fields ranging in human genetics, the Hypermobile EDS Genetic Research Network will function as the nucleus for research design, data collection and analysis during the course of the genomic mapping.
The Ehlers-Danlos Society is using the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of patients, researchers, and other stakeholders who are focused on addressing the common health issues associated with this group of high morbidity, high-disease-burden conditions, leading to the development of a patient-centered research proposal. The coalition will help to develop partnerships, governance infrastructure, channels of communication, and an outreach plan which will form a solid foundation for future collaborative work.