Reports to: Education & Events Director 

Location: UK, Remote Based 

Working Hours: Full-Time, 9AM-5PM UK  

Salary: £40,000 per annum (UK based) / $50,000 per annum (US based)

Revised: September 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 EDS ECHO Manager, working with two coordinators will have day-to-day accountability for administrative and operational functions of the EDS ECHO program. Working with the EDS ECHO Director, the Coordinators, and teams from the Society, the Manager will also support strategic development of the EDS ECHO portfolio delivering program sustainability and growth in accordance with defined targets and goals that ensure a positive impact on our community.  

Key Responsibilities/Essential Functions  

Department Administration and Management 

• Provide leadership by managing, delegating, overseeing, and supporting the EDS ECHO team, fostering a collaborative and productive work environment. 
• Work with the EDS ECHO department to efficiently coordinate and manage administrative and operational running of all aspects of EDS ECHO programs and course.  
• Liaise with facilitators and Session Administrators to ensure they are adhering to guidelines and best practices and assisting development of creating agendas in advance of programs etc. 
• Maintaining up to date data storage of databases for EDS ECHO programs and courses. 
• Keeping all relevant program and course calendars and content up to date, including the advertising, scheduling, and running of sessions. 
• Preparing, uploading, and maintaining EDS ECHO session resources on the Ehlers-Danlos Society website. 
• Prepare and submit Continuing Medical Education (CME) applications with support from the CMO. 
• Attending any EDS ECHO sessions as planned where required to be the program or course Administrator. 
• Liaising with Facilitators, Speakers, other non-staff administrators, and participants. 
• Attend bi-weekly business meetings, and facilitators and session administrator meetings. 
• Work closely with the Events team to assist where appropriate in coordinating the preparation and delivery of EDS ECHO conferences/events. 

Society Operational Management 

• Manage and evaluate the Key Performance Indicators (KPIs) used for the quarterly board reports and provide additional information e.g. key challenges/achievements. 
• Track and report Income for EDS ECHO programs via the Key Performance Indicators (KPIs) and to the Education & Events Director. 
• Work closely with the CMO, EDS ECHO Director, and Education & Events Director to facilitate financial reporting for EDS ECHO conferences and events, ensuring seamless collaboration. 
• Support strategic development of the EDS ECHO program with the Exec team. 

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  

• In-depth knowledge of program management and development procedures. 
• Experience of budget and report development and presentations. 
• Excellent organizational, project management and time management skills. 
• Ability to multi-task, remain calm and work under pressure in a fast-paced environment. 
• Ability to act on own initiative and to make decisions unassisted. 
• Flexible and adaptable, a proven track record of working in change environments with ambiguity. 
• 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, Aircall, 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 (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.