Work With Us

Reports to: Community Education Manager

Location: UK or US, Remote Based

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

Salary: £26,000 / $34,000 per annum (depending on location)

Revised: December 2024

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 Education Coordinator will collaborate with internal and external stakeholders to produce accessible, relevant, and practical educational resources for people living with EDS and HSD, including content for The Ehlers-Danlos Society’s website, app, and social media platforms. The Content Coordinator will focus on making scientific information easier to understand, with an emphasis on written and visual content, awareness materials, and content for kids and teens with EDS and HSD.

Key Responsibilities/Essential Functions

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

Practical Resources

• Collaborate with the Community Education Coordinator to develop accessible, relevant, and practical educational resources, including webpages, printables, and community guides, focused on managing various aspects of EDS, HSD, and related conditions.
• Design engaging content for The Ehlers-Danlos Society App, aimed at enhancing the lives of people with EDS and HSD.
• Provide concise and accessible summaries of research articles to disseminate research updates to the EDS and HSD community.
• Work in partnership with internal and external stakeholders to publish content relevant to the community and healthcare professionals.
• Review and update educational materials to ensure they reflect the latest understanding of EDS, HSD, and related conditions.
• Support other departments by reviewing their content to ensure it meets our information standards.

Video Content and Graphics

• Work with the events and communications teams to create and maintain a comprehensive audit of video and graphic content.
• Identify and integrate relevant video and graphic content into our educational resources.
• Propose ideas for graphics and video content, including social media graphics, educational infographics, short video content, and long video content.

Kids and Teens Content

• Develop a strategic approach for educating kids and teens about EDS, HSD, and related conditions.
• Create educational materials specifically tailored for kids and teens to learn about EDS, HSD, and related conditions.
• Assist other departments with planning and executing programs for kids and teens.

Awareness Efforts

• Develop resources designed to help individuals raise awareness about EDS and HSD.
• Plan and execute an awareness campaign for EDS & HSD Awareness Month in May.
• Continuously propose and implement ideas to enhance global understanding and awareness of EDS and HSD.
• Engage with external stakeholders to improve awareness of EDS and HSD.

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

• Bachelor’s degree in biological sciences or a related scientific field
• Strong scientific and/or medical background with the ability to communicate scientific information with a lay audience
• Excellent written communication skills and proven demonstrated experience with science communication
• Knowledge of EDS and HSD and dedication to continue learning
• Excellent organization and time management skills and the ability to prioritize workload.
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.
• Must be eligible to work in the US/UK without sponsorship.
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings.
• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint) as well as Monday.com, Zoho Voice, Zoom & Teams.
• The ability to work in a virtual team setting and work independently.
• Ability to occasionally work evenings and weekends.
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.
• Travel to and attend our two in-person staff retreats per year (1 UK & 1 US based).
• Travel to and attend our in-person annual Global Learning Conference, and other events as required from time to time.

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.

Reports to: Chief Operations Officer  

Location: United Kingdom or United States, Remote Based 

Working Hours: Full-Time, 40 hours per week, 9AM-5PM GMT or ET 

Salary: £70,000 / $90,000 per annum (dependent on location) 

Revised: November 2024 

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  

This newly created, full-time role provides both operational and strategic leadership for the growing Research Department at The Society. The Senior Research Operation Director will work closely with the Operations Team, Chief Medical and Scientific Officer (CMSO), and CEO to ensure research activities align with the organization’s mission and objectives.  

The Senior Director will oversee a portfolio of high-impact initiatives, including the Global Biobank, DICE Global Registry, major studies, database management, grant awards, and the CORE Networks of Excellence program. Additionally, they will foster and maintain relationships with key stakeholders, including the International Consortium on EDS and HSD. As the CMSO will retain oversight of research compliance and governance, the Senior Director role does not involve undertaking research or acting in an investigator capacity.  

Key responsibilities include guiding the department’s strategic direction, ensuring high-quality project management, and fostering staff development to build operational and strategic capabilities. The Senior Director will also oversee financial and resource planning, including comprehensive budget management for research programs, to ensure fiscal responsibility and optimal resource use.  

Finally, this role involves generating and contributing to reports, utilizing integrated project management tools such as Monday.com to manage deadlines and workflows, and driving income generation and growth opportunities to support the continued success and impact of the department.  

Key Responsibilities/Essential Functions  

This role has six (6) core areas of ownership, the responsibilities involved include, but are not limited to:  

Strategic Leadership and Oversight  

• Provide strategic leadership for the growing research department, ensuring initiatives align with organizational goals, advance the Society’s mission, and foster a culture of equity, inclusion, and collaboration.  
• Collaborate closely with the Operations team, CMSO, and CEO to develop and implement strategic plans that drive impact across the Society. 
• Lead operational planning and monitoring of research programs, working with cross-functional teams to ensure all deliverables are met on time and to the highest standards.  

Team Management and Development 

• Manage and mentor a diverse team, fostering an inclusive, collaborative, and innovative work culture that integrates contributions from other departments to enhance program delivery. 
• Oversee staff development, including operational skills training, goal setting, and performance assessments.  
• Develop equitable long-term development plans, ensuring all team members have access to growth opportunities and are equipped to meet evolving organizational needs.  

Stakeholder Engagement and Relationship Building 

• Build and maintain strong relationships with research collaborators, funders and external partners.  
• Foster inter-departmental collaboration across the Society, ensuring inclusive and equitable participation in the seamless execution of research programs and alignment with organizational objectives.  
• Act as a central point of coordination, ensuring all departments are aligned and contributing effectively to program goals and milestones.  
• Collaborate with internal and external stakeholders to identify opportunities for new partnerships and future program growth.  
• Support the research department in external meetings, conferences, and events. 

Project Management and Monitoring 

• Oversee the creation of detailed project plans, integrating input and workflows from key departments utilizing tools like Monday.com to track milestones, deadlines, and resource allocation.  
• Prepare and contribute to monthly director reports, quarterly board reports, The Society’s annual report, and Business & Marketing plans.  
• Conduct strategic workforce and resource mapping, coordinating with other departments to optimize operational efficiency and ensure all functions are adequately supported.  

Financial Management and Accountability 

• Lead comprehensive budget planning, tracking, and management across all research programs, working closely with our Financial Director.  
• Ensure financial accountability by aligning departmental Objectives and Key Results (OKRs) and Key Performance Indicators (KPIs) with organizational goals.  
• Support long-term sustainability through cost-effective resource allocation and income generation initiatives.  

Change Leadership and Innovation  

• Drive process improvements and operational efficiency within the department, leveraging cross-functional collaboration to identify and implement innovative solutions.  
• Lead change management initiatives, maintaining team morale and productivity during transitions.  

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 and Expertise  

• Significant experience in operations management, preferably within a research-related environment. 
• Proven track record of managing complex programs, including budget oversight, team leadership, and strategic planning. 
• Demonstrated success in building and managing relationships with diverse stakeholders, funders, and external partners. 
• Experience with operational process improvement and implementing strategic plans that involve coordination across departments to align objectives with organizational goals. 
• Expertise in overseeing large-scale initiatives and ensuring timely, high-quality delivery. 
• Proficiency in budget planning, tracking, and resource allocation for multiple projects or programs. 
• Commitment to financial accountability and cost-effectiveness. 

Skills and Competencies  

• Skilled in guiding and mentoring diverse teams to achieve both operational and strategic outcomes. 
• Strong organizational skills with the ability to balance multiple priorities and deadlines. 
• Proactive and solution-oriented mindset, with the ability to address challenges and drive improvements in processes and systems. 
• Strong decision-making, change leadership, and problem-solving skills, even in resource-constrained environments. 
• Creative and resilient, with a solution-focused and lateral thinking approach. 
• Proficient in Microsoft Office (Outlook, Word, Excel, PowerPoint) and collaboration tools such as Monday.com, Zoho Voice, Zoom, and Teams. 
• Comfortable working independently and within a virtual team setting. 

Work Environment and Travel Requirements  

• Must be eligible to work in the US or UK without sponsorship. 
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings. 
• Ability to occasionally work evenings and weekends. 
• Stable internet connection required for video calls and cloud-based services, as this is a fully remote role. 
• Ability to travel for two in-person staff retreats annually  
• Ability to travel to the annual Global Learning Conference and other events as required. 

Preferred Experience and Qualifications  

• Experience in research project design and delivery, with knowledge of IRB/ethics, ICH-GCP, GDPR, HIPAA, and related compliance. 
• A Clinical Management qualification (e.g., CCRC, SOCRA) or other relevant certification. 
• Knowledge of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). 

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.