Job Opportunities

Position: Community Engagement Coordinator
Position Type: Full-time
Required Timezone: Outside UK/Europe
Salary Range: $28,000 – $32,000
Application Closing Date: September 24, 2021

Overview of Responsibilities 
The Community Engagement Coordinator will provide appropriate support, information, and advice to our community through The Society’s EDS and HSD message board, virtual support groups, social media platforms and Helpline services. This role will also be responsible for managing our volunteers and global affiliates.  
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. 
  • Working with our UK-based communications team to support our social media community management on all Society social media channels, moderating comments, messages, and inquiries, ensuring North American hours are covered.  
  • Provide listening support and information to individuals contacting The Society Helpline. 
  • Respond to all Helpline contacts in a professional and sensitive manner, treating all individuals with consideration and respect. 
  • Assess and meet The Society’s needs through the recruitment, placement, coordination and retention of volunteers. (Online and at conferences) 
  • Assist in the coordination of the Junior Zebra program. 
  • Assist with scheduling and hosting virtual support groups 
  • Work with the Global affiliate program – which aims to expand outreach, programming, and collaborative efforts with outstanding regional and local support groups, charities, and societies 
  • Ensure that all safeguarding and data protection procedures are followed. 
  • Complete all administration associated with the service, including accurate and timely recording of data for all contacts received, contact outcomes, and monitoring information. 
  • Contribute to the analysis of Helpline data and identification of trends. 

Work Environment  
Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of The Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some weekend work.   

  • 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. 
  • The ability to read and understand medical articles and explain scientific information to a lay audience. 
  • Excellent English language reading, writing, and speaking skills. Additional languages desirable but not essential.  
  • The ability to work well with others in a team, including working virtually, and independently.  
  • Proficient in using Microsoft Office applications (Word, Outlook, Excel, PowerPoint). 
  • Knowledge of HIPAA and GDPR preferable (training will be provided).
  • Professional experience working on Social Media Platforms (Facebook, Instagram, Twitter, You Tube, Tik Tok etc.) 
  • Experience of handling information of a confidential/sensitive nature. 
  • Excellent time management skills and the ability to prioritize workload.  
  • Ability to work flexibly to accommodate working across global time-zones.
  • Willingness to attend two in-person retreats in the UK and USA annually.  
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    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.