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Volunteer Opportunities

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.  

The International Consortium 
 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. 

Key Responsibilities/Essential Functions 

  • The major responsibilities of this position include, but are not limited to:  
  • Serve as an ambassador for the wider EDS and HSD community identifying community needs 
  • 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. 

Requirements 

  •   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. 

If you would like to be considered, please complete this form.

Overview of Responsibilities 
Inspire Volunteers work with the Community Education Department to provide information and resources to people with EDS and HSD. These volunteers moderate, create, and contribute to discussions on Inspire, where the Ehlers-Danlos Society hosts a community for those living with EDS and HSD. Volunteers do not provide medical advice but identify and provide information, resources, and support to community members.

Key Responsibilities/Essential Functions 

The major responsibilities of this position include, but are not limited to:  

  • Oversee and contribute to message board discussions, helping community members learn about types of EDS and HSD, common comorbid conditions, treatment options, and resources available for their needs
  • Ensure Community Guidelines are followed and assist in making the message board a supportive environment for members  
  • Provide accurate information, and correct misinformation so that members learn and trust the information provided to them

Requirements 

  • An approach that demonstrates kindness, caring, a non-judgmental nature, and diplomacy 
  • An approach that recognizes and supports diversity in the community
  • The ability to deal with inappropriate conversations and conflict 
  • A good knowledge and a willingness to continue learning about the types of Ehlers-Danlos syndromes and hypermobility spectrum disorders, and the common comorbid conditions  
  • A good knowledge and a willingness to continue learning about the types of Ehlers-Danlos syndromes and hypermobility spectrum disorders, and the common comorbid conditions
  • Good English language reading, writing, and speaking skills 
  • Willingness to independently research for answers 

Work Environment  

This volunteer opportunity is fully remote. Volunteers will have flexible schedules and should be able to commit to volunteering for 5-10 hours/week. 

If you would like to be considered, please complete the form below.

  • Max. file size: 2 MB.

The Ehlers-Danlos Society’s commitment to diversity and inclusion drives the four pillars of our mission forward: research, education, advocacy and care, and awareness. We are a global, multicultural organization, as such we seek to increase opportunities for individuals of diversified backgrounds, and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates and promotes opportunities regardless of race, religion, color, national origin, sex, disability, age, veteran status, and other protected status as required by applicable law.