Community Engagement Coordinator

Position: Community Engagement Coordinator 

Reports to: COO 

Location: UK or US, Remote Based 

Working Hours: Full-Time, 9am-5pm (GMT/EST) 

Contract: Fixed-Term, 12 Months (reviewed annually)  

Salary: £26,000 / $34,000 (dependent on location)  

Revised: December 2025 

Organization Overview  

The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.  

  
Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.  

Overview of Responsibilities  

The Community Engagement Coordinator is responsible for managing The Society’s core community-facing channels and ensuring that individuals receive timely, accurate, and supportive responses. This includes overseeing both helpline@ and info@, supporting safe and meaningful engagement within the Inspire platform, and supporting in monitoring incoming messages across The Society’s social media accounts. 

The Coordinator provides clear signposting, maintains safe online spaces, and ensures enquiries and themes are routed to the right teams across the organization. The role requires strong communication skills, sound judgement, and the ability to understand EDS and HSD information to an appropriate level to triage confidently, act within defined boundaries, and escalate when needed. By capturing recurring questions and community needs across channels, the Coordinator helps surface insights that support continuous improvement across programs and communications.  

This role ensures the community receives trusted, consistent support and strengthens the organization’s understanding of emerging needs. 

Key Responsibilities/Essential Functions  

This role has four (4) core areas of ownership, the responsibilities involved include, but are not limited to:  

Mailbox Management (Community Support & General Enquiries) - approx. 50% of role  

• Oversee both helpline@ and info@ as The Society’s primary community-facing mailboxes. 
• Manage helpline@ as the main channel for community support questions, providing clear, consistent signposting using approved templates, guidance documents, and information standards. 
• Monitor info@, responding directly where appropriate and routing general enquiries to the relevant internal teams (e.g., research, development, events, etc.). 
• Use sound judgement across both mailboxes to determine when enquiries can be answered directly versus when specialist or program-level input is required. 
• Identify any messages requiring escalation, including safeguarding concerns, complex support needs, or questions outside The Society’s remit. 
• Track recurring themes and community needs emerging across both inboxes, sharing useful insights to support internal planning and program improvements. 
• Maintain timely, accurate responses and documentation across both mailboxes, and ensure all related SOPs and templates are kept up to date, accurate, and consistently applied.  
• Contribute ideas that help shape future resources, FAQs, templates, and content based on community needs. 

Inspire Moderation, Engagement & Development – approx. 20% of role 

• Moderate The Society’s Inspire community, ensuring conversations remain safe, respectful, and aligned with community guidelines. 
• Support and help manage new and existing closed groups, providing safe and focused spaces for members to connect around shared needs or topics. 
• Work proactively with The Society’s dedicated Inspire account manager to: 
• Explore new features and opportunities to strengthen community engagement. 
• Identify areas where the platform can better support the community. 
• Understand trends or emerging needs surfaced through member activity. 
• Use respectful, anonymized insights from Inspire activity to inform internal teams, support program decisions, and highlight themes requiring organizational attention. 
• Support development and refinement of platform guidelines, onboarding processes, and group descriptions.  
• Contribute to FAQs and resource updates based on recurring community questions and comments.  

Social Media Community Support & Monitoring – approx. 15% of role 

• Support the Senior Marketing Director in monitoring incoming comments, messages, tags, and mentions across all major social media channels. 
• Provide first-response answers using approved templates and guidance, escalating to program leads or colleagues when specialist input is required. 
• Flag misinformation, harmful content, repeated concerns, or community misunderstandings that require clarification or wider communication. 
• Share useful trends, frequently asked questions, or recurring themes with relevant teams to help shape future messaging, resources, and planning. 
• Help maintain a consistent, supportive tone across all responses and interactions. 
• Contribute to FAQs and resource updates based on recurring community questions and comments.  

Data, Insight & Continuous Improvement – approx. 10% of role  

• Compile and share anonymized insight summaries from community interactions (email, Inspire, social media) to support program planning, content development, and emerging needs assessments. 
• Identify recurring questions or gaps in community understanding and propose opportunities for new resources, templates, or communications. 
• Support continuous improvement of internal processes by flagging inefficiencies, recommending updates, and helping refine templates or SOPs. 
• Stay informed about best practices in online community management, digital support, triage boundaries, and moderation approaches. 
• Keep up to date with developments in the broader landscape of health-related online communities, peer-connection models, and digital engagement tools. 
• Bring forward ideas, insights, or examples that could help The Society support the community in new, creative, or more effective ways. 
• Engage in ongoing learning related to EDS and HSD, ensuring triage, signposting, and community guidance remains accurate and current. 

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 be required to travel to company events, meetings, and conferences as well as some weekend work.   

Requirements  

Experience & Expertise 

• Knowledge of EDS and HSD and dedication to continue learning to support accurate triage and signposting. 
• Strong scientific and/or medical background with the ability to communicate scientific information with a lay audience. 
• Experience providing support or managing enquiries in a customer-facing, community-facing, or administrative setting. 
• Demonstrated ability to follow established procedures, maintain accurate documentation, and manage tasks reliably. 
• Experience moderating online communities or managing user-generated content. 
• Ability to navigate sensitive or emotionally complex situations with calm and clarity. 
• Proven ability to follow SOPs and contribute updates when processes change. 

Skills & Competencies  

• Excellent written and verbal communication skills. 
• Strong attention to detail and accuracy in logs, documentation, and responses. 
• Sound judgement in determining when to respond directly and when to escalate or route enquiries. 
• Ability to manage multiple communication channels at once (email, online platforms, social media monitoring). 
• Confident using digital tools and able to learn new platforms quickly (e.g., Inspire, mailbox systems, or project management tools). 
• Strong time-management skills and the ability to work independently while contributing to a remote team. 
• Ability to uphold community guidelines, moderate discussions fairly, and maintain psychological safety in online spaces. 
• Proactive communication of risks, delays, or emerging concerns. 
• Ability to work within clearly defined boundaries and escalate appropriately. 

Work Environment & Travel Requirements  

• Must be eligible to work in the US or UK without sponsorship.  
• Reliable internet connection for video calls and cloud-based services, as this is a fully remote role.  
• Ability to attend one in-person retreat annually (UK).  
• Ability to travel to other in-person meetings and events as required. 
• Proficiency in MS Office Suite (Outlook, Word, Excel, PowerPoint), Teams, Zoom, Slack, and Monday.com (training provided). 

Preferred Experience & Qualifications  

• Bachelor’s degree in biological sciences or a related scientific field. 
• Understanding of safeguarding considerations for online communities. 
• Familiarity with HIPAA and GDPR is preferred (training provided). 
• Experience supporting individuals with chronic illness or rare conditions. 
• Experience summarizing qualitative insights or community feedback. 
• Experience collaborating with cross-functional teams. 

Diversity Statement    

The Ehlers-Danlos Society’s commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. - providing care, access, research and education in all that we do. We are a global, multicultural organization, as such, we seek to increase opportunities for individuals from 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, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.