The International Consortium 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 International Consortium 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 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.
Overview of Responsibilities
The Community Voice 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. They must have extensive experience and/or knowledge within the specialty group of interest. Understanding the essential characteristics of EDS and HSD, its management and development of communication skills are key components to this role. Community Voice Experts contribute to educating other community members, but they can also help update knowledge of health professionals and participate in the development and evaluation of educational programs or guidelines, as well as participate in community events.
Key Responsibilities/Essential Functions
The major responsibilities of this position include, but are not limited to:
- Contribute to updating knowledge of health professionals.
- Contribute to the development and evaluation of educational programs.
- Help define patient-relevant outcomes.
- Represent community members within the specialty group.
- Extensive knowledge/experience of EDS and HSD, particularly within the group’s specialty.
- Willing to get involved in research and activities.
- Motivated to engage with the community.
- Exhibit an awareness of the community perspective surrounding EDS and HSD.
- Actively attend and participate in meetings.
- Effectively communicate with stakeholders across the community and professional networks.