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 (dependent on location)

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.

Location: UK or US, Remote Based

Working Hours: Full-Time, 9AM-5PM (GMT/EST)

Salary: Up to £35,000/$47,500 per annum (dependent on location and experience)

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

Revised: November 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 Peer-to-Peer Fundraising Coordinator supports the planning, execution, and growth of P2P fundraising initiatives while providing essential administrative and operational support to the development team. This role ensures smooth campaign execution, helps cultivate relationships with participants, and manages behind-the-scenes operations to strengthen donor engagement and fundraising outcomes.

Key Responsibilities/Essential Functions

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

Fundraiser Engagement, Support & Stewardship

• Support the achievement of P2P revenue targets by activating, motivating, and stewarding fundraisers to increase participation, engagement, and donations.
• Provide frontline support to P2P participants via email, messages, and calls.
• Deliver coaching tips, reminders, and milestone recognition.
• Manage thank-you communications, participant messages, and success stories.
• Ensure a consistent and high-quality participant experience from signup through campaign close.
• Maintain accurate records of participant interactions for reporting and operational purposes.

Digital Campaign & Platform Management

• Build and maintain fundraising and team pages, ensuring content, images, goals, and participant rosters are up to date.
• Manage email automations, social toolkits, and platform communications.
• Troubleshoot participant issues, such as login problems, page edits, or donation questions.
• Escalate complex issues to the Development Director as needed.

Recruitment & Activation Support

• Support outreach to new fundraisers, corporate teams, and volunteers.
• Prepare recruitment materials, toolkits, templates, and talking points.
• Track recruitment activity and participant engagement metrics.
• Send reminders and motivational communications to help activate participants successfully.
• Work towards agreed participation and activation targets by using engagement data to prioritize follow-ups and highlight and gaps or risks to the Development Director.

Data Tracking & Reporting

• Maintain accurate participant, team, and revenue data in CRM and P2P platforms.
• Generate weekly reports to monitor progress and flag trends, gaps, and opportunities.
• Assist with post-campaign reconciliation to ensure accurate donor and participant records.

Cross-Functional Collaboration

• Coordinate with communications, marketing, and development teams on content, email campaigns, and social toolkits.
• Collect and organize impact stories or materials to enhance participant communications.
• Provide operational input for campaign planning and execution to ensure smooth cross-team workflows.

Peer to Peer Community Support

• Assist in organizing and facilitating kickoff calls, webinars, and other community engagement activities.
• Track participation and feedback to inform improvements for future P2P programs.

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

• Proven experience in non-profit fundraising, events, marketing, or communications, preferably in health or medical sectors.
• Strong customer service and donor stewardship skills with the ability to engage and support diverse participants.
• Experience working with UK/European non-profit fundraising; US experience is advantageous.
• Comfortable working in a target-driven fundraising environment and contributing directly to the achievement of participation and fundraising goals.
• Ability to motivate, energize, and coach and advise fundraisers on improving their pages, messaging, and outreach.
• Demonstrated ability to analyze campaign data and identify trends, gaps, and opportunities for improvement.
• Highly organized with strong attention to detail and ability to manage multiple tasks or programs simultaneously.
• Demonstrated sensitivity and empathy when supporting individuals and families who may be personally impacted by EDS and HSD or other health conditions.
• Demonstrated ability to work independently while exercising sound professional judgment.
• Experience supporting complex projects from start to finish, including tracking, documentation, and reporting.
• Excellent written and verbal communication skills, including proofreading and engaging with stakeholders at all levels.
• Proficiency with MS Office Suite, Microsoft Teams, Zoom, Slack, Monday.com, Funraise, ZohoVoice, Tiltify, and JustGiving.
• 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.
• The ability to work in a virtual team setting and independently.
• Ability to occasionally work evenings and weekends to prepare for in-person Society events.
• Stable internet connection is required 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 globally to hybrid 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.

Reports to: COO

Location: UK or US, Remote Based

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

Contract: Fixed-Term, 12 Months (reviewed annually)

Salary: £26,000 / $34,000 (dependent on location)

Revised: December 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 Community Engagement Coordinator is responsible for managing The Society’s core community-facing channels and ensuring that individuals receive timely, accurate, and supportive responses. This includes overseeing both helpline@ and info@, supporting safe and meaningful engagement within the Inspire platform, and supporting in monitoring incoming messages across The Society’s social media accounts.

The Coordinator provides clear signposting, maintains safe online spaces, and ensures enquiries and themes are routed to the right teams across the organization. The role requires strong communication skills, sound judgement, and the ability to understand EDS and HSD information to an appropriate level to triage confidently, act within defined boundaries, and escalate when needed. By capturing recurring questions and community needs across channels, the Coordinator helps surface insights that support continuous improvement across programs and communications.

This role ensures the community receives trusted, consistent support and strengthens the organization’s understanding of emerging needs.

Key Responsibilities/Essential Functions

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

Mailbox Management (Community Support & General Enquiries) – approx. 50% of role

• Oversee both helpline@ and info@ as The Society’s primary community-facing mailboxes.
• Manage helpline@ as the main channel for community support questions, providing clear, consistent signposting using approved templates, guidance documents, and information standards.
• Monitor info@, responding directly where appropriate and routing general enquiries to the relevant internal teams (e.g., research, development, events, etc.).
• Use sound judgement across both mailboxes to determine when enquiries can be answered directly versus when specialist or program-level input is required.
• Identify any messages requiring escalation, including safeguarding concerns, complex support needs, or questions outside The Society’s remit.
• Track recurring themes and community needs emerging across both inboxes, sharing useful insights to support internal planning and program improvements.
• Maintain timely, accurate responses and documentation across both mailboxes, and ensure all related SOPs and templates are kept up to date, accurate, and consistently applied.
• Contribute ideas that help shape future resources, FAQs, templates, and content based on community needs.

Inspire Moderation, Engagement & Development – approx. 20% of role

• Moderate The Society’s Inspire community, ensuring conversations remain safe, respectful, and aligned with community guidelines.
• Support and help manage new and existing closed groups, providing safe and focused spaces for members to connect around shared needs or topics.
• Work proactively with The Society’s dedicated Inspire account manager to:
  • Explore new features and opportunities to strengthen community engagement.
  • Identify areas where the platform can better support the community.
  • Understand trends or emerging needs surfaced through member activity.
• Use respectful, anonymized insights from Inspire activity to inform internal teams, support program decisions, and highlight themes requiring organizational attention.
• Support development and refinement of platform guidelines, onboarding processes, and group descriptions.
• Contribute to FAQs and resource updates based on recurring community questions and comments.

Social Media Community Support & Monitoring – approx. 15% of role

• Support the Senior Marketing Director in monitoring incoming comments, messages, tags, and mentions across all major social media channels.
• Provide first-response answers using approved templates and guidance, escalating to program leads or colleagues when specialist input is required.
• Flag misinformation, harmful content, repeated concerns, or community misunderstandings that require clarification or wider communication.
• Share useful trends, frequently asked questions, or recurring themes with relevant teams to help shape future messaging, resources, and planning.
• Help maintain a consistent, supportive tone across all responses and interactions.
• Contribute to FAQs and resource updates based on recurring community questions and comments.

Data, Insight & Continuous Improvement – approx. 10% of role

• Compile and share anonymized insight summaries from community interactions (email, Inspire, social media) to support program planning, content development, and emerging needs assessments.
• Identify recurring questions or gaps in community understanding and propose opportunities for new resources, templates, or communications.
• Support continuous improvement of internal processes by flagging inefficiencies, recommending updates, and helping refine templates or SOPs.
• Stay informed about best practices in online community management, digital support, triage boundaries, and moderation approaches.
• Keep up to date with developments in the broader landscape of health-related online communities, peer-connection models, and digital engagement tools.
• Bring forward ideas, insights, or examples that could help The Society support the community in new, creative, or more effective ways.
• Engage in ongoing learning related to EDS and HSD, ensuring triage, signposting, and community guidance remains accurate and current.

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

• Knowledge of EDS and HSD and dedication to continue learning to support accurate triage and signposting.
• Strong scientific and/or medical background with the ability to communicate scientific information with a lay audience.
• Experience providing support or managing enquiries in a customer-facing, community-facing, or administrative setting.
• Demonstrated ability to follow established procedures, maintain accurate documentation, and manage tasks reliably.
• Experience moderating online communities or managing user-generated content.
• Ability to navigate sensitive or emotionally complex situations with calm and clarity.
• Proven ability to follow SOPs and contribute updates when processes change.

Skills & Competencies

• Excellent written and verbal communication skills.
• Strong attention to detail and accuracy in logs, documentation, and responses.
• Sound judgement in determining when to respond directly and when to escalate or route enquiries.
• Ability to manage multiple communication channels at once (email, online platforms, social media monitoring).
• Confident using digital tools and able to learn new platforms quickly (e.g., Inspire, mailbox systems, or project management tools).
• Strong time-management skills and the ability to work independently while contributing to a remote team.
• Ability to uphold community guidelines, moderate discussions fairly, and maintain psychological safety in online spaces.
• Proactive communication of risks, delays, or emerging concerns.
• Ability to work within clearly defined boundaries and escalate appropriately.

Work Environment & 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.
• Proficiency in MS Office Suite (Outlook, Word, Excel, PowerPoint), Teams, Zoom, Slack, and Monday.com (training provided).

Preferred Experience & Qualifications

• Bachelor’s degree in biological sciences or a related scientific field.
• Understanding of safeguarding considerations for online communities.
• Familiarity with HIPAA and GDPR is preferred (training provided).
• Experience supporting individuals with chronic illness or rare conditions.
• Experience summarizing qualitative insights or community feedback.
• Experience collaborating with cross-functional teams.

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.