Job Description

Position:

Road to 2026 (RT26) Project Manager

Reports to:

Chief Operations Officer

Location:

US / UK, Remote Based

Working Hours:

Full-Time, 9am-5pm (EST/BST)

Contract:

Fixed-Term until December 31, 2027

Salary:

50,000 / $69,500

Revised:

September 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 Road to 2026 (RT26) Project Manager will own and drive the operational delivery of all organizational activities connected to the RT26 initiative. This includes both the preparation required to position the Society for success and the dissemination work needed to maximize global impact.

This is a high-accountability role responsible for translating strategic priorities into clear project plans, aligning cross-departmental resources, and ensuring operational deliverables are completed on time, within budget, and to standard. The postholder will proactively manage risks, capacity, and interdependencies, while embedding structure, clarity, and accountability across all teams.

Acting as the central point of coordination, the Project Manager will ensure that RT26 is operationally delivered successfully and sustainably, providing the organization with the infrastructure, systems, and processes needed to achieve lasting impact.

Key Responsibilities/Essential Functions

This role has five (5) core areas of ownership. The responsibilities involved include, but are not limited to:

Project Leadership & Accountability

Own and drive the full lifecycle of the Road to 2026 (RT26) initiative, ensuring delivery on time, within budget, and to a high standard. Hold accountability for aligning cross-departmental workstreams (research, operations, communications, fundraising) to RT26 milestones. Anticipate risks, resource gaps, and delivery challenges, and lead solutions proactively.
Strategic Coordination

Translate high-level strategy into detailed, actionable project plans with clear responsibilities and deadlines. Ensure consistent application of planning tools and decision-making frameworks across all RT26 activities. Monitor interdependencies between programs and keep leadership fully briefed on progress and emerging issues.
Stakeholder Engagement & Communication

Act as the central point of accountability for internal and external stakeholders, ensuring clarity on goals, expectations, and outcomes. Prepare authoritative progress reports, dashboards, and presentations for leadership, the Board, and funders. Represent RT26 confidently in meetings, driving decisions and ensuring follow-through.
Capacity Building & Delivery Support

Strengthen team capability by embedding best practices in project planning, resource mapping, and evaluation. Ensure staff have the tools, processes, and clarity needed to deliver their contributions effectively. Coach and challenge colleagues where needed to maintain high standards of delivery and accountability.
Impact & Reporting

Track and evidence the impact of RT26 through robust data, financial monitoring, and outcome measurement. Translate findings into actionable insights that inform leadership decision-making and strengthen organizational learning. Ensure RT26 contributes directly to the Society's long-term sustainability and positioning as a global leader.

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

Demonstrated ability to lead and deliver complex, multi-year, multi-stakeholder projects from initiation through to completion. Proven track record of holding direct accountability for timelines, budgets, risks, and reporting at organizational or program level. Background in managing projects in a nonprofit, research, healthcare, or global program context, ideally in complex or regulated environments. Experience building and overseeing operational infrastructure: project planning tools, reporting systems, governance frameworks, and cross-department coordination. Evidence of success in projects where strategic alignment, funding, and impact measurement were critical to outcomes.
Skills & Competencies

Confident leader who can drive accountability across teams and challenge constructively when standards are not met. Skilled at turning strategy into execution: translating vision into clear deliverables, timelines, and responsibilities. Exceptional communicator, able to brief and report clearly to senior leadership, boards, and funders. Strong stakeholder management, facilitation, and negotiation skills; comfortable navigating complex or sensitive decisions. Highly organized and detail-focused, with strong capacity for risk assessment and problem-solving. Proficient in Microsoft Office (Outlook, Word, Excel, PowerPoint) and collaboration tools such as Monday.com, Zoom, and Slack. Comfortable working independently in a remote, global, fast-paced organization.
Work Environment & Travel Requirements

Fully remote; must be based in the US or UK and eligible to work without sponsorship. Reliable high-speed internet for video calls and cloud tools. Comfortable collaborating across time zones; occasional early/late meetings. Occasional evenings/weekends for events and outreach. Travel to one in-person, UK based, staff retreats annually, and additional events as required.
Preferred Experience & Qualifications

Recognized project management qualification (e.g., PMP, PRINCE2, AgilePM, or equivalent) - highly desirable. Experience in governance reporting or managing projects tied to major publications. Familiarity with data privacy frameworks (GDPR/HIPAA); training provided.

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 Type: Full-time

Pay: 50,000.00 per year

Benefits:

Additional leave Casual dress Company events Health & wellbeing programme Life insurance Sabbatical 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/47aJbLx
Work Location: Remote