Program Manager - EDS ECHO

Position: EDS ECHO Manager

Reports to: Educational Programs Director

Location: UK or US, Remote Based

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

Contract: Fixed-Term (12 months with annual opportunities for extension)

Salary: £41,000 / $53,000 per annum (depending on location)

Revised: October 2026

Organization Overview

The Ehlers-Danlos Society is dedicated to improving the lives of people affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Through research, education, and collaboration, we work to accelerate diagnosis, improve access to effective clinical care and management, and accelerate the development of dedicated therapeutic treatments.

Our vision is a world in which every person living with EDS or HSD receives timely diagnosis and equitable access to the right treatment and care for their individual needs.

Overview of Responsibilities

The EDS ECHO Manager leads the day-to-day delivery of EDS ECHO, with line management responsibility for the EDS ECHO team and accountability for the program’s operational and administrative functions.

Working closely with the Educational Programs Director and teams across The Society, the Manager also contributes to the strategy, development, and delivery of the wider educational portfolio as it evolves and grows. The role provides project management and oversight of program governance, supporting quality, sustainability, and progress against agreed targets.

Through this work, the Manager ensures that EDS ECHO contributes to The Society’s work to address the most pressing challenges affecting people with EDS and HSD by accelerating diagnosis, driving the development of treatments and therapies, advancing access to care, and educating and connecting the community.

Key Responsibilities/Essential Functions

Department Administration and Management

· Line manage the EDS ECHO team, setting clear priorities, delegating responsibilities, reviewing performance, and supporting professional development.

· Lead operational planning and delivery of EDS ECHO programs and courses, overseeing workloads, resources, and timelines to ensure effective delivery.

· Oversee program administration, ensuring the team maintains accurate databases, calendars, communications, website content, and session resources.

· Establish and maintain clear procedures and quality standards, ensuring facilitators, speakers, and session administrators understand their responsibilities and follow agreed guidelines.

· Oversee preparation of program agendas and session materials, working with the team and facilitators to ensure content is timely, relevant, and aligned with program objectives.

· Coordinate Continuing Medical Education (CME) and CEU applications and associated requirements, with support from the Educational Programs Director & CMO.

· Manage relationships with facilitators, speakers, external administrators, and participants, providing guidance and resolving escalated issues.

· Use team and facilitator meetings to review delivery, address challenges, share learning, and agree actions.

· Identify operational risks and opportunities for improvement, implementing changes and escalating significant issues to the Educational Programs Director.

· Provide hands-on administrative and session support where required to maintain continuity of delivery and respond to team needs.

Society Operational Management

· Monitor and evaluate EDS ECHO performance against agreed KPIs and strategic objectives, contributing to quarterly board reports with updates on progress, achievements, challenges, and priorities.

· Track and report income from EDS ECHO programs to the Educational Programs Director, supporting financial oversight and program sustainability.

· Work closely with the Educational Programs Director, Content team, and Events team to support content development for Society summits and other educational events, recommending topics, themes, and potential speakers informed by stakeholder needs and program insights.

· Contribute to the strategic development of EDS ECHO and the wider educational portfolio, working with the Educational Programs Director and Executive team to identify opportunities aligned with The Society’s objectives.

· Coordinate operational planning and project delivery across the educational portfolio, monitoring timelines, resources, risks, and dependencies.

· Maintain effective program governance, reporting processes, and procedures, using evaluation findings and stakeholder feedback to inform improvements.

· Provide flexible support across the Educational Programs team as required, contributing to wider team priorities and activities as needed.

· Actively develop personal capability relevant to the role and apply learning to strengthen both program performance and leadership effectiveness.

· Define (with leadership input as needed) and maintain a practical measurement framework that supports funder reporting, internal decision-making, and continuous improvement.

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

Knowledge & Interpersonal Skills

· Strong knowledge of program management and development, including operational planning, governance, evaluation, and continuous improvement.

· Ability to translate strategic objectives into practical plans, priorities, and measurable outcomes.

· Strong people management skills, with the ability to delegate effectively, support staff development, and build a collaborative team.

· Experience of budget monitoring, KPI reporting, and preparing clear reports and presentations for senior leadership.

· Excellent organizational, project management, and time management skills, with the ability to balance team capacity and competing priorities.

· Sound judgment and initiative, with the ability to make decisions independently and recognize when issues require escalation.

· Strong communication and relationship management skills, with the ability to work effectively with colleagues, clinical experts, facilitators, and participants.

· Ability to remain calm under pressure, resolve problems, and maintain quality in a fast-paced environment.

· Flexibility and adaptability, with experience of managing change and working effectively through ambiguity.

· Knowledge of GDPR and HIPAA requirements relevant to the role is desirable. Training will be provided.

· Proficiency in Microsoft Office applications (Outlook, Word, Excel, and PowerPoint), with experience of project management and online delivery platforms such as Monday.com, Zoom, and Teams.

Work Environment & Travel Requirements

· Must be eligible to work in the UK/US without sponsorship.

· Ability to work independently in a remote team setting.

· Reliable internet connection for remote work, video calls, and cloud-based collaboration.

· Ability to attend one in-person offsite meeting annually (UK), paid for by Society.

· Willingness to travel to other in-person meetings and events as required.

· Flexibility to occasionally work evenings or weekends when needed.

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.

Job Types: Full-time, Fixed term contract
Contract length: 12 months

Pay: £41,000.00 per year

Benefits:

• Bereavement leave
• Casual dress
• Enhanced maternity leave
• Enhanced paternity leave
• Health & wellbeing programme
• Life insurance
• Work from home

Application question(s):

• To be considered for this role, please apply directly using The Society's application form here - https://wkf.ms/3VLCOLF

Work Location: Remote