Reports To: Community Operations Director
Working Hours: Full-Time, 40 hours per week, 9AM-5PM ET
Location: United States, Remote Based
Salary: $34,000 per annum
Revised: March 2025

Organization Overview

The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related symptoms and conditions. We are proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.

Overview of Responsibilities

The Community Coordinator will provide expert-level information, support, and engagement to the EDS and HSD community through a variety of Society programs, including the Helpline, virtual support groups, Inspire, and social media platforms.

Key Responsibilities/Essential Functions

This role has three (3) core areas of ownership. The responsibilities involved include, but are not limited to:

Community Education and Support

• Provide information, resources, and support to the EDS and HSD community globally through the Helpline.
• Schedule and host virtual support groups and work to continuously improve the program.
• Moderate and contribute to discussions on Inspire’s EDS and HSD community message board.

Community Engagement

• Assist our Communications team to provide social media community management across Society social media platforms.
• Contribute to the planning and production of practical, accessible, and engaging educational resources.

Community Program Administration

• Contribute to the analysis of program data and identification of trends, reporting findings back to the Community Programs Director.
• Establish standard operating procedures, processes and policies to enhance existing programs
• Attend department meetings and the weekly full team meeting every week.
• 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.
• Become an expert user of all relevant platforms and tools required to effectively deliver and manage core programs, ensuring optimal utilization to support core program success.
• Continuously assess program workflows and processes to identify opportunities for improvement, proposing enhancements to streamline operations and increase impact, efficiency, and overall effectiveness in collaboration with the wider team and Directors.

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 and evening work.

Requirements

Education & Knowledge

• Bachelor’s degree in a relevant field (e.g., Biological, Health, or Medical Sciences, Psychology, Social Work, Sociology, Communications, Education, or a related discipline).
• Strong scientific and/or medical background, particularly in genetics.
• Ability to research a wide range of topics and to communicate complex scientific information in an accessible way.
• Strong knowledge of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), with a commitment to continuous learning.

Communication & Interpersonal Skills

• Excellent English language skills (reading, writing, and speaking).
• Strong interpersonal skills, with an emphasis on empathy, patience, and compassionate support for individuals with diverse experiences and needs.
• Experience in community engagement, including facilitating discussions and building strong relationships.
• Ability to handle confidential and sensitive information with discretion, including navigating difficult conversations and conflict resolution.

Professional Experience

• Experience in a similar role within the nonprofit sector, social work, counseling, healthcare, or education field is preferred.
• Experience managing social media platforms (Facebook, Instagram, X, YouTube, TikTok) is preferred.
• Familiarity with HIPAA and GDPR is preferred (training provided).
• Proficiency in MS Office Suite (Outlook, Word, Excel, PowerPoint), Teams, Zoom, Slack, Monday.com, and Zoho (training provided).

Workstyle & Flexibility

• Strong organizational and time management skills, with the ability to prioritize workload effectively.
• Commitment to diversity, equity, and inclusion, with the ability to promote equal opportunity practices.
• Flexibility to work across global time zones as needed.
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings.
• Willingness to host virtual support groups outside of regular business hours (evenings and/or weekends).

Work Environment and 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.

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.