Reports to: Community Education Manager

Location: UK or US, Remote Based

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

Salary: UK – £27,000 per annum / US – $36,000 per annum (dependent on location)

Contract: Fixed-Term Contract (6 Months)

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 Educational Resource Coordinator supports the development and coordination of educational resources related to the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated topics. The role contributes to a range of educational initiatives by helping transform information into clear, accessible resources for community, professional, and public audiences across multiple formats and platforms. Working across resource development, review, publication, and translation activities, the Educational Resource Coordinator helps ensure educational content is accurate, consistent, and accessible.

Key Responsibilities/Essential Functions

This role has three (3) core areas of ownership, the responsibilities involved include, but are not limited to:

Educational Resource Production, Repurposing, and Support

• Develop, adapt, and update educational resources related to EDS, HSD, and associated topics, including webpages, infographics, brochures, printables, videos, guides, and other educational materials.
• Repurpose approved content into multiple formats to improve accessibility, reach, and engagement across community, professional, and public audiences.
• Translate scientific, clinical, and technical information into clear, accessible educational resources.
• Update assigned resources to reflect approved terminology, classifications, organizational priorities, and emerging evidence.
• Support alignment of educational content across The Ehlers-Danlos Society’s website, app, social media channels, newsletters, educational programs, and other communication platforms.
• Collaborate with internal and external stakeholders to develop, review, and publish educational resources.

Graphics, Web, and Review Coordination

• Coordinate assigned educational resources through drafting, review, revision, and publication workflows.
• Collaborate with internal teams and external contributors to support the timely development and publication of educational resources.
• Prepare content briefs, supporting materials, and content handoffs for web, design, communications, and other teams.
• Track assigned projects, timelines, feedback, and approvals using project management and content tracking systems.
• Incorporate reviewer feedback and support revisions to educational resources as required.
• Support quality assurance and continuous improvement activities, including content reviews, feedback collection, and other initiatives to help ensure educational resources are accurate, accessible, publication-ready, and aligned with organizational priorities.

Translation Coordination

• Plan, coordinate, and support the implementation of translation activities for educational resources across multiple languages, where required.
• Prepare source materials and coordinate translation workflows to support the development and review of multilingual educational resources.
• Collaborate with internal teams, translators, volunteers, Global Alliance members, and external translation providers to support multilingual resource development.
• Obtain translation quotes, coordinate translation projects, and track timelines, deliverables, and resource needs.
• Coordinate the review and quality assurance of translated resources to support accuracy, consistency, accessibility, and alignment with organizational standards.
• Develop and maintain processes, documentation, and tracking systems to support the efficient management of multilingual educational resources.

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 science, health, education, communications, public health, or a related field.
• Strong written communication skills.
• Experience creating or adapting educational content.
• Ability to explain complex information clearly for broad audiences.
• Excellent organization, time management, and project coordination skills, with ability to manage timelines, track details, and follow workflows.
• Confidence using Microsoft Word, PowerPoint, Excel, Teams/Slack, and project management systems such as Monday.com.
• Ability to work within review processes and defined boundaries.
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.
• Ability to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning, evening, or weekend work.

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 Marketing Officer

Location: United Kingdom, Remote Based

Working Hours: Full-Time, Monday-Friday 9AM-5PM GMT/BST (40hrs per week)

Contract Type: Fixed-Term Contract (12-months)

Salary: £27,000 per annum

Revised: April 2026

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 Social Media Moderator is responsible for maintaining safe, engaging, and supportive online spaces across The Society’s social media channels. This role focuses on monitoring conversations, responding appropriately to community questions, and ensuring interactions align with community guidelines. The Moderator plays a key role in surfacing trends, recurring questions, and insights to help the organization respond effectively to community needs.

This role requires excellent communication skills, sound judgement, and an understanding of EDS and HSD information sufficient to triage queries confidently, act within defined boundaries, and escalate issues when needed. By moderating social media interactions and tracking community activity, the Moderator helps strengthen The Society’s digital engagement, support, and understanding of emerging community needs.

Key Responsibilities/Essential Functions

This role has two (2) core areas of ownership, the responsibilities involved include, but are not limited to:

Social Media Community Support & Moderation

• Monitor comments, messages, mentions, and tags across all major social media channels.
• Provide timely, accurate, and supportive first responses using approved templates and guidance.
• Escalate messages requiring specialist input, safeguarding attention, or program-level intervention.
• Flag misinformation, harmful content, repeated concerns, or misunderstandings requiring broader communication.
• Ensure a consistent, positive, and supportive tone across all interactions.
• Share trends, recurring questions, and insights with relevant teams to inform messaging, resources, and program development.
• Contribute to updating FAQs, templates, and resources based on observed community questions and discussions.

Data, Insight & Continuous Improvement

• Compile anonymized summaries of trends, themes, and recurring questions across social media platforms.
• Identify gaps in community understanding and propose content, resource, or process improvements.
• Contribute ideas for enhancing community engagement, online support, and moderation approaches.
• Keep informed about best practices in online moderation, digital community management, and peer-support models.
• Maintain up-to-date knowledge of EDS and HSD to ensure guidance, responses, and escalation remain accurate and safe.

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

• Strong knowledge of EDS and HSD, with a commitment to ongoing learning to provide accurate guidance and support.
• Ability to communicate complex information clearly to a lay audience.
• Experience in moderating online communities or managing user-generated content on social media or digital platforms.
• Demonstrated ability to navigate sensitive or emotionally complex situations with calm, clarity, and professionalism.
• Experience providing support or managing enquiries in a community-facing or administrative context.
• Proven ability to follow established procedures, maintain accurate documentation, and manage tasks reliably.

Skills & Competencies

• Excellent written and verbal communication skills, with a friendly, clear, and supportive time.
• Strong attention to detail and accuracy in logs, documentation, and responses.
• Sound judgement in determining when to respond directly versus escalate or route issues.
• Ability to manage multiple digital channels simultaneously.
• Confident in using digital tools and adaptable to learning new platforms quickly.
• Strong time-management skills and ability to work independently while contributing to a remote team.
• Ability to uphold community guidelines, moderate discussions, and maintain psychological safety online.
• Proactive communication of risks, delays, or emerging community concerns.
• Ability to work within clearly defined boundaries and escalate appropriately.

Work Environment and Travel Requirements

• Must be eligible to work in the 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.
• Familiarity with HIPAA and GDPR is preferred (training provided).
• 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, health sciences, or related fields.
• Scientific and/or medical background.
• Understanding safeguarding considerations for online communities.
• Experience supporting individuals with chronic illness, rare conditions, or specialized health communities.
• Experience summarizing qualitative insights, social media trends, or community feedback.
• Experience collaborating with cross-functional teams and contributing to resource development or content strategy.

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 Marketing Officer

Location: United States, Remote Based

Working Hours: Full-Time, Monday-Friday 11AM-7PM PT / 2PM-10PM ET (40hrs per week)

Contract Type: Fixed-Term Contract (12-months)

Salary: $36,000 per annum

Revised: April 2026

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 Social Media Moderator is responsible for maintaining safe, engaging, and supportive online spaces across The Society’s social media channels. This role focuses on monitoring conversations, responding appropriately to community questions, and ensuring interactions align with community guidelines. The Moderator plays a key role in surfacing trends, recurring questions, and insights to help the organization respond effectively to community needs.

This role requires excellent communication skills, sound judgement, and an understanding of EDS and HSD information sufficient to triage queries confidently, act within defined boundaries, and escalate issues when needed. By moderating social media interactions and tracking community activity, the Moderator helps strengthen The Society’s digital engagement, support, and understanding of emerging community needs.

Key Responsibilities/Essential Functions

This role has two (2) core areas of ownership, the responsibilities involved include, but are not limited to:

Social Media Community Support & Moderation

• Monitor comments, messages, mentions, and tags across all major social media channels.
• Provide timely, accurate, and supportive first responses using approved templates and guidance.
• Escalate messages requiring specialist input, safeguarding attention, or program-level intervention.
• Flag misinformation, harmful content, repeated concerns, or misunderstandings requiring broader communication.
• Ensure a consistent, positive, and supportive tone across all interactions.
• Share trends, recurring questions, and insights with relevant teams to inform messaging, resources, and program development.
• Contribute to updating FAQs, templates, and resources based on observed community questions and discussions.

Data, Insight & Continuous Improvement

• Compile anonymized summaries of trends, themes, and recurring questions across social media platforms.
• Identify gaps in community understanding and propose content, resource, or process improvements.
• Contribute ideas for enhancing community engagement, online support, and moderation approaches.
• Keep informed about best practices in online moderation, digital community management, and peer-support models.
• Maintain up-to-date knowledge of EDS and HSD to ensure guidance, responses, and escalation remain accurate and safe.

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

• Strong knowledge of EDS and HSD, with a commitment to ongoing learning to provide accurate guidance and support.
• Ability to communicate complex information clearly to a lay audience.
• Experience in moderating online communities or managing user-generated content on social media or digital platforms.
• Demonstrated ability to navigate sensitive or emotionally complex situations with calm, clarity, and professionalism.
• Experience providing support or managing enquiries in a community-facing or administrative context.
• Proven ability to follow established procedures, maintain accurate documentation, and manage tasks reliably.

Skills & Competencies

• Excellent written and verbal communication skills, with a friendly, clear, and supportive time.
• Strong attention to detail and accuracy in logs, documentation, and responses.
• Sound judgement in determining when to respond directly versus escalate or route issues.
• Ability to manage multiple digital channels simultaneously.
• Confident in using digital tools and adaptable to learning new platforms quickly.
• Strong time-management skills and ability to work independently while contributing to a remote team.
• Ability to uphold community guidelines, moderate discussions, and maintain psychological safety online.
• Proactive communication of risks, delays, or emerging community concerns.
• Ability to work within clearly defined boundaries and escalate appropriately.

Work Environment and Travel Requirements

• Must be eligible to work in the US 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.
• Familiarity with HIPAA and GDPR is preferred (training provided).
• 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, health sciences, or related fields.
• Scientific and/or medical background.
• Understanding safeguarding considerations for online communities.
• Experience supporting individuals with chronic illness, rare conditions, or specialized health communities.
• Experience summarizing qualitative insights, social media trends, or community feedback.
• Experience collaborating with cross-functional teams and contributing to resource development or content strategy.

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: Learning & Education Director 

Location:  UK or US, Remote Based 

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

Working Hours: 9AM-5PM GMT/ET (location dependent) 

Contract Type:  Fixed-term contract (12 months), with the intention to renew on an annual rolling basis, subject to program funding. 

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.  

Program Overview 

The CORE Network of Excellence Program is a global, multi-site initiative The program also embeds participation in the Global DICE EDS & HSD Registry and Global Biobank within routine clinical care and supports real-world implementation of diagnostic and care standards across diverse health system contexts. CORE Network sites operate as active learning and implementation environments, contributing to workforce development, research participation, and continuous improvement in care delivery. 

Overview of Responsibilities  

The CORE Network Manager is accountable for the strategic delivery, coordination, and continuous improvement of The Ehlers-Danlos Society’s CORE Network of Excellence Program. 

The role has primary responsibility for implementing and managing a global, internship-anchored program model designed to build clinical workforce capacity in EDS and HSD, while facilitating research participation and supporting real-world implementation of diagnostic and care standards across participating CORE sites.

This is a delivery-focused management role requiring strong program ownership, systems thinking, and the ability to translate organizational strategy into structured, measurable program outcomes across diverse health system contexts. Success in the role is defined by the effective operation of the CORE Network, the quality and consistency of internship delivery, and demonstrable progress across workforce, research, and implementation objectives. 

Key Responsibilities/Essential Functions  

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

Program Delivery & Oversight

• Own delivery of the CORE Program, ensuring program components operate as a single, coherent program model.
• Translate program strategy into clear delivery plans, including annual objectives, program planning, objective delivery milestones, and quality expectations. 
• Establish and maintain a consistent internship-hosting model across sites, including requirements, learning expectations, supervision standards, and practical delivery guidance. 
• Ensure research participation (DICE Global Registry and Global Biobank) is embedded into routine clinical pathways at participating sites in ways that are feasible, ethical, and consistently applied. 
• Support consistent real-world implementation of the Road to 2026 diagnostic and care criteria across the network, identifying where implementation varies and what support is needed to improve consistency. 
• Coordinate internal cross-functional delivery (e.g., Learning and Education, Research, Operations, Communications as needed) so that sites receive timely inputs, decisions are unblocked, and deliverables stay on track. 
• Maintain program documentation and operating rhythms (e.g., site participation requirements, key processes, guidance materials, reporting calendar), ensuring clarity and consistency across a global network. 
• Actively manage delivery risks, dependencies, and constraints; escalate material issues appropriately and propose practical solutions that protect program outcomes. 

Site & Stakeholder Management  

• Build and manage effective, trust-based relationships with participating CORE sites, ensuring clarity of expectations, accountability, and follow-through. 
• Lead site onboarding and ongoing engagement, ensuring sites understand and meet requirements related to internship hosting, research integration, and standards implementation. 
• Serve as the primary point of coordination for site communications, problem-solving, and issue resolution, maintaining momentum and consistency across regions and health system contexts. 
• Coordinate engagement with external clinical, academic, and institutional stakeholders as required to support internship delivery and program objectives. 
• Support governance-aligned collaboration with clinical leaders and subject matter experts to ensure program delivery remains credible, safe, and fit-for-purpose. 

Insight, Measurement & Continuous Improvement  

• Lead the program’s monitoring, evaluation, and learning approach, ensuring consistent capture of workforce, research participation, implementation, and patient-experience-relevant signals across core sites. 
• Define (with leadership input as needed) and maintain a practical measurement framework that supports funder reporting, internal decision-making, and continuous improvement. 
• Ensure data and insight are collected and managed in ways that are usable and comparable across sites, and that feedback loops to sites are timely and improvement oriented. 
• Produce high-quality program reporting and narrative updates for funders and internal leadership, communicating progress, outcomes, learnings, and course-corrections clearly. 
• Use evidence and on-the-ground feedback to refine program guidance, internship models, site enablement, and operating processes over time. 
• Actively develop personal capability relevant to the role (e.g., workforce development, clinical education models, health systems change, implementation practice, research participation integration, impact measurement) and apply learning to strengthen both program performance and leadership effectiveness. 

Line Management & Team Support  

• Provide line management to the CORE Coordinator, including setting clear priorities, supporting workload planning, and ensuring work is delivered to an appropriate standard and timeline. 
• Support the professional development of the Coordinator through regular check-ins, feedback, and development conversations, escalating support needs where appropriate. 
• Ensure day-to-day supervision, leave planning (PTO/TIL), and coverage are managed effectively so that program delivery is not disrupted. 
• Contribute to performance review and development planning processes in coordination with People Operations. 

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 experience managing and delivering complex programs within healthcare, clinical education, workforce development, research, or health systems contexts. 
• Experience working with clinical services, multidisciplinary care environments, or health-related institutions. 
• Proven ability to translate strategic objectives into operational plans, deliverables, and measurable outcomes.
• Experience coordinating and supporting external partners or sites, ideally across more than one organization, geography, or system. 
• Experience overseeing or contributing to programs that integrate service delivery with learning, research, or quality improvement. 

Skills & Competencies  

• Strong program management skills, including planning, prioritization, risk management, and delivery across multiple workstreams. 
• Sound judgement and decision-making skills, with the ability to manage ambiguity and escalate appropriately. 
• Systems thinking, with the ability to understand and manage interdependencies between workforce development, research participation, and care delivery. 
• Strong stakeholder management skills, including the ability to build credibility and maintain productive working relationships with clinical and institutional partners. 
• Clear and confident written and verbal communication skills, including the ability to produce structured reports and updates for senior stakeholders and funders. 
• Ability to manage and support others’ work, providing clarity, feedback, and oversight while maintaining momentum and quality. 

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  

• Knowledge of EDS and HSD, or a strong commitment to developing subject-matter expertise in these conditions and their care pathways. 
• Experience supporting or managing clinical education, internships, fellowships, or other structured workforce development initiatives. 
• Familiarity with research participation frameworks, or implementation of clinical standards within care settings. 
• Experience working across international or cross-cultural contexts. 
• Experience contributing to monitoring, evaluation, learning, or impact reporting for funded programs. 
• Familiarity with HIPAA and GDPR is preferred (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.  

Reports to: CEO

Location: United States, Remote Based

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

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

Salary: Up to $150,000 per annum

Revised: February 2026

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 CPO will serve as a key member of the executive leadership team, responsible for architecting and leading The Society’s global philanthropic strategy to drive sustainable, mission-aligned growth. They will oversee the full donor and philanthropic partner journey and relationship building, from strategic acquisition and cultivation to long-term stewardship and major investment, ensuring a seamless experience that reflects The Society’s ambition and credibility.

Working in close partnership with colleagues across the organization, the CPO will shape and position The Society’s portfolio of programmatic activity into compelling, investable opportunities. In collaboration with program leaders, they will translate complex priorities into clear funding propositions that demonstrate measurable outcomes, return on mission investment, and long-term value.

The CPO will cultivate high-level relationships with major donors, institutional funders, and strategic stakeholders globally, serving as a trusted and authoritative representative of The Society. Through disciplined revenue modeling, diversified portfolio strategy, and data-informed decision-making, they will build scalable funding infrastructure that advances both immediate priorities and future growth.

This is a transformational leadership role requiring executive presence, strong sales skills and proven impact, strategic foresight, deep relationship building abilities and the ability to align diverse stakeholders around a unified vision. Success will be defined by measurable revenue growth, increased diversification, strengthened institutional credibility, and the creation of a scalable philanthropic infrastructure capable of supporting The Society’s long-term mission ambitions.

Key Responsibilities/Essential Functions

This role has seven (7) core areas of ownership, the responsibilities involved include, but are not limited to:

Global Philanthropic Strategy & Revenue Growth

• Architect and lead a diversified, multi-year global philanthropic strategy aligned to The Society’s mission across research and education.
• Establish clear revenue growth pathways across major gifts, institutional funding, and emerging philanthropic models.
• Continuously assess the philanthropic and health funding landscape, identifying trends, competitive dynamics, and strategic opportunities that strengthen The Society’s market positioning and distinct value proposition.
• Develop long-range revenue forecasting, scenario planning, and financial modeling in partnership with the CFO and executive leadership to support informed, forward-looking decision-making.
• Design and evolve innovative funding vehicles and partnership models that expand philanthropic reach and enhance The Society’s visibility and credibility within global research and education ecosystems.
• Define and monitor performance indicators that support disciplined growth, resilience, and sustained donor confidence.

Institutional Donor Strategy & Stewardship

• Design and lead an integrated, organization-wide donor engagement strategy that ensures a seamless journey from initial connection through long-term partnership and major investment.
• Serve as the steward for The Society’s most significant donor and institutional relationships, ensuring alignment, continuity, and strategic depth of engagement.
• Establish clear institutional standards for donor experience, communication, and stewardship, reinforcing trust, credibility, and consistency across all teams.
• Strengthen portfolio management, segmentation strategy, and executive oversight of key relationships to increase retention, deepen engagement, and cultivate transformational giving.
• Embed rigorous stewardship and impact reporting frameworks that clearly demonstrate measurable outcomes and return on mission investment, especially related to research.
• Safeguard The Society’s reputation with donors and partners by ensuring disciplined relationship management and coordinated engagement at all levels.

Transformational Philanthropy & Partnerships

• Personally cultivate, solicit, and steward high-capacity individuals, family foundations, institutional funders, and strategic partners capable of significant and transformational investment.
• Lead the development of high-value, integrated funding propositions that align research and education priorities with the interests of major donors and institutional partners.
• Build and actively manage a disciplined pipeline of major and institutional prospects, ensuring strategic progression from initial engagement through long-term partnership.
• Represent The Society in high-level philanthropic, research, healthcare, and education forums, strengthening its visibility, credibility, and influence within global funding ecosystems.

Corporate & Strategic Sector Engagement

• Lead The Society’s strategic engagement with healthcare, biotech, life sciences, education, and aligned sectors, positioning the organization as a credible and high-impact partner.
• Develop long-term alliances, partnership frameworks, and mission-aligned models that support sustainable growth and reputational strength.
• Identify and evaluate emerging partnership and earned-revenue opportunities, ensuring alignment with mission, ethics, and long-term strategy.
• Expand The Society’s presence in key funding markets, building relationships that support both revenue growth and strategic influence.
• Ensure that partnerships enhance, rather than dilute, The Society’s integrity and public trust.

Mission Alignment & Impact Articulation

• Position The Society’s research and education portfolio as a compelling, investable proposition within the global health and rare disease funding landscape.
• Lead the development of clear investment cases that articulate expected outcomes, measurable milestones, and defined return, including financial leverage, return on engagement, and social return on investment.
• Embed outcome-driven thinking into philanthropic strategy, ensuring funding opportunities are structured around impact, scalability, and long-term value creation.
• Strengthen institutional capability in impact articulation and reporting, enabling consistent, credible communication of progress and results to donors and partners.
• Ensure alignment between philanthropic commitments and programmatic delivery, safeguarding credibility and reinforcing donor confidence.

Executive & Board Partnership, Governance & Revenue Oversight

• Serve as the principal advisor to the Board on philanthropic strategy, revenue growth trajectory, diversification, and long-term funding sustainability.
• Partner closely with the CFO to ensure alignment between revenue strategy, financial planning, reserves policy, and organizational risk management.
• Provide clear and forward-looking reporting to the Board on revenue performance, pipeline strength, donor concentration exposure, and strategic funding risks.
• Identify and proactively manage revenue-related risks, including over-dependence on single funding sources, partnership misalignment, or reputational exposure.
• Ensure that funding partnerships meet agreed ethical standards and safeguard integrity, in collaboration with executive leadership.
• Engage and support Board members in their role as ambassadors and strategic partners in philanthropic relationship development.
• Contribute to Board-level discussion on long-range sustainability, ensuring revenue strategy is integrated with organizational strategy and financial stewardship.

Executive Leadership, Performance & Capacity Building

• Provide strategic leadership to the development department, setting clear priorities, performance standards, and accountability frameworks aligned with executive and board expectations.
• Establish and oversee robust KPIs, dashboards, and performance metrics to ensure disciplined revenue tracking, pipeline visibility, and data-informed decision-making.
• Build and mentor a high-performing team, strengthening capability in partnerships, donor strategy and engagement, and impact articulation to meet increasing levels of sophistication and scale.
• Ensure strong operational infrastructure, CRM integrity, compliance, and reporting accuracy that reinforce donor confidence and institutional credibility.
• Identify and implement the talent, systems, and structural investments required to responsibly scale revenue and philanthropic impact.
• Foster a culture of continuous professional development within the development team, setting expectations for proactive learning, skill-building, and adoption of emerging best practices.
• Actively engage in personal development, remaining at the forefront of trends in philanthropic strategy, digital and data-enabled fundraising, health and rare disease funding landscapes, and emerging innovation ecosystems (including health technology and AI). Apply this learning to strengthen strategic positioning, leadership effectiveness, and the evolution of The Society’s philanthropic approach.

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 success designing and leading multi-million-dollar, diversified philanthropic strategies within health, medical research, rare disease, education, or science-based nonprofit environments.
• Proven experience securing and stewarding six and seven figure gifts and philanthropic partnerships, with direct responsibility for high-capacity donor relationships.
• Experience building, scaling, or repositioning development functions to support sustainable growth and increasing levels of sophistication.
• Demonstrated ability to translate complex programmatic strategies into compelling investment cases for major donors and institutional funders.
• Experience developing multi-year revenue forecasts, pipeline strategies, and performance frameworks aligned with executive and board oversight.
• Experience positioning an organization within competitive philanthropic or health funding landscapes, identifying growth opportunities and strategic differentiation.
• Track record of integrating impact measurement and outcome reporting into donor strategy, including articulating return on investment, return on engagement, or social return on investment.

Skills & Competencies

• Strategic and enterprise-level thinking, with the ability to align philanthropic growth with institutional priorities.
• Executive presence and credibility, with the confidence to represent the organization in high-level donor, corporate, and sector forums.
• Sophisticated relationship management capability, including navigating complex donor motivations and long-term partnership dynamics.
• Strong commercial and financial acumen, including revenue modeling, scenario planning, and performance monitoring.
• Advanced communication skills, with the ability to articulate complex priorities as clear, investable propositions.
• High emotional intelligence, discretion, and sound judgement when engaging donors, partners, and colleagues across varied contexts.
• Ability to establish clear standards, performance expectations, and accountability frameworks within a development function.
• Systems-level thinking, with the ability to assess interdependencies between funding strategy, program delivery, impact measurement, and organizational credibility.
• Commitment to continuous professional growth, with demonstrated engagement in evolving philanthropic strategy, digital and data-enabled fundraising models, and emerging health and innovation ecosystems.

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

• Knowledge of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), or a demonstrated commitment to developing subject-matter expertise in these conditions and their care, research, and lived experience contexts.
• Experience within rare disease, medical research, health innovation, or clinical education environments.
• Familiarity with venture philanthropy models, impact investment approaches, or innovation-driven funding ecosystems.
• Experience engaging corporate partners within healthcare, biotech, life sciences, or health technology sectors.
• Experience operating in international or cross-cultural contexts.
• Knowledge of GDPR and HIPAA frameworks relevant to donor data and health-related engagement (training will be provided).
• Familiarity with modern CRM and donor analytics platforms, with experience leveraging data to inform strategic decision-making.

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.