Reports to: Chief Finance Officer

Location: UK, Remote Based

Working Hours: Full-Time, 9AM-5PM GMT/BST

Salary: £59,000 per annum

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

Revised: May 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 Events Director will play a pivotal role in directing the overall planning and strategy for live, virtual and hybrid events for The Society, orchestrating and managing a wide range of conferences, and activities to engage our community, effectively communicate our message, and ensure seamless execution, while ensuring alignment with organizational strategy. In addition, you will oversee departmental operations, including resource planning, risk mitigation, contingency development and contribute to employee engagement activities, and represent The Society at key industry events.

Key Responsibilities/Essential Functions

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

Events Team Collaboration

• Take the lead in strategic planning for meetings, events, and conferences, aligning them with The Society’s objectives and fostering community involvement.
• Responsible for arranging staff/consultant attendance at external meetings, conferences, events and all other Society related travel.
• Provide high-level oversight of all events and meeting logistics by setting strategic directions and ensuring excellence through effective delegation. Assign and guide the events team in executing all aspects of event planning and delivery, including contract negotiations, site selection, speaker coordination, vendor management, travel, accommodations, catering, accessibility, AV, entertainment, and merchandise while maintaining accountability for overall quality and success.
• Responsible for coordination of cross-team collaborations on organization-wide projects.
• Manage visibility of The Society at global events and meetings, building brand presence and networking with industry peers.
• Identify volunteer opportunities to support the delivery of Society events.
• Oversee staff and board retreat organization with the events team, People Ops Manager, and EA, encompassing venue selection, negotiation, catering arrangements, AV requirements, team-building activities, evening meals, and engagement activities.
• Coordinate regional fundraising events and activities aimed at building collaborative networks and raising awareness.
• Ensure that events provide inclusive spaces for diverse perspectives to be valued and respected.
• Contribute to inter-departmental strategic planning processes and actively participate within the Executive team.
• Oversee the use of event data, feedback, and performance metrics/KPIs to evaluate impact and inform continuous strategic improvement.

Event Accessibility

• Ensure Diversity, Equity, and Inclusion (DEI) principles are integrated into all engagement activities within the events team.
• Facilitate focus groups as a form of market research to gather feedback and insights for ongoing and future educational initiatives.
• Utilize discussions to provide valuable input for the development of tailored events, content and resources, ensuring relevance and responsiveness to community needs.
• Continue building successful initiatives like Junior Zebra programs providing engaging and enriching experiences for youth, ensuring programs remain relevant and meet the evolving needs of the youth demographic.

Line Management

• Provide leadership by managing, delegating, overseeing, and supporting the Events department, promoting a collaborative and productive work environment, and supporting team members with professional growth and development.
• Oversee and support the creation of monthly executive reports, quarterly board reports, and other directors’ reports for The Society.
• Lead departmental risk management, proactively identifying and mitigating risks related to event delivery, and ensuring contingency plans are in place for high-priority activities.
• Ensure that all team members are aligned with organizational objectives and deadlines.
• Identify any areas needing improvement or additional support.
• Collaborate with the Chief Financial Officer to manage budgets and finances for events, ensuring accuracy and transparency in financial reporting.
• Optimize resource allocation and utilization for maximum impact.
• Track deadlines and milestones and ensure effective project monitoring and management.
• Take a proactive approach to identifying improvement opportunities and innovation.
• Ensure compliance with relevant legal, safeguarding, health and safety, privacy, and organizational governance requirements across all event activities.
• Conduct annual appraisals and support development plan implementation for direct reports
• Oversee and mentor the Events Manager, and Events Coordinator.

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

Education & Knowledge

• Demonstrated expertise in managing events/programs, delegates, and vendor relationships.
• Exceptional comprehension of event marketing and strategies for engaging audiences effectively.
• Experience managing distributed or remote teams across multiple regions; fully virtual leadership experience is preferred.
• Strong collaborative and leadership capabilities, characterized by a clear and confident decision-making demeanor.
• Experience with budget forecasting and financial accountability for large-scale events.

Professional Experience

• Proficiency in utilizing event management technology and tools.
• Extensive experience crafting and designing events and programs, encompassing themes, messages, branding, content, and innovative approaches to enhance audience engagement and interaction.
• Outstanding project management abilities, adept at handling multiple timelines, deadlines, and tasks within a fast-paced collaborative environment.
• Exceptional problem-solving skills, with a talent for devising solutions and surmounting challenges.
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.
• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint) as well as Monday.com, Zoom & Teams.

Communication & Interpersonal Skills

• Excellent written and verbal communication skills, couples with strong interpersonal abilities.
• Proven track record of effectiveness in contract negotiations.
• Proficient in compiling and delivering clear and impactful reports to various stakeholders, both internal and external.
• Demonstrated ability to influence and engage senior leaders, board members, sponsors, and external stakeholders.
• Skilled in presenting strategic recommendations and outcomes to executive and governance audiences.

Workstyle & Flexibility

• 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 work independently.
• Ability to occasionally work evenings and weekends.
• Self-driven, proactive, and highly energetic.
• Adaptable, versatile, and adept at performing well under pressure.

Work Environment & Travel Requirements

• Must be eligible to work in the US/UK without sponsorship.
• Stable internet connection required for video calls & 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.

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: Research Data & Access Director

Location: UK or US, Remote Based

Contract: 30 hours per week, Fixed Term Contract (12 Months) Maternity Cover

Salary: £30,750 per annum (£41,000 FTE) UK / $39,750 per annum ($53,000 FTE) US Dependent on Location

Role Start Date: August 2026

Revised: May 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 Biobank Manager oversees four key areas. In Project Management, responsibilities include scoping the biobank landscape, developing SOPs, and facilitating team collaboration. Monthly and quarterly reporting, Biobank provision, and communication maintenance are vital. In Data Management, ensuring privacy, maintaining a participant’s registry, and coordinating with other staff are key. Quality Management involves enforcing SOPs and promoting continuous professional development. Society-led Work includes identifying opportunities, liaising with senior staff, and developing SOPs for various processes. Throughout, effective communication and proactive identification of areas for improvement are emphasized.

The Biobank Manager role provides line management, operational support, and oversight for the hEDS/HSD Criteria Study Coordinator role alongside core Biobank Manager responsibilities. The coordinator also supports the Biobank Manager in all aspects of Biobank recruitment including clinical sites, event organization, and administration.

Key Responsibilities/Essential Functions

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

Project Management

• Maintain close working relationships with SAMPLED, the biobank repository, liaising between SAMPLED, study sites, event planners, and researchers.
• Development and maintenance of the Standard Operating Procedures (SOPs), protocols, technical notes, guidelines, and flow charts for the relationships and governance between The Society, internal society research, external researchers, and the biobank.
• Arrange and chair meetings with staff teams as needed throughout this process including finance, research, comms and marketing, graphics etc., Liaising and work collaboratively with senior management.
• Maintain Biobank provision, providing quarterly operational reports on Biobank activity.
• Ensure sufficient communication between your team and other departments to allow smooth operations.
• Identify areas of improvement and implement new policies as applicable.

Data Management

• Ensure the privacy of information related to clients’ data and samples.
• Development and maintenance of a registry to track participant enrolment and sample population of the biobank, working collaboratively with the DICE Registry.
• Maintain/refine accurate data storage applicable to maintaining The Society’s full awareness of the utilization of the Biobank (both sample inputs and sample retrieval).
• Co-ordinate with other Society Staff responsible for third-party relationships in research, monitoring utilization of tissue samples in close cooperation with researchers.
• Supervise accurate documentation of all work with staff within the Society as appropriate.
• Ensure sufficient communication between your team and other departments to allow smooth operations.
• Identify areas of improvement and implement new policies as applicable.

Quality Management

• Ensure all parties utilizing the Biobank (both for provision of and use of samples) comply with all the SOPs and governance set out in the Society’s protocols.
• Enforce the implantation of Standard Operating Procedures (SOPs) and risk assessments, instigating review processes when necessary.
• Ensure continuous professional development by keeping up to date with knowledge and skills in line with current best practices.
• Ensure sufficient communication between your team and other departments to allow smooth operations.

Society-led Work to Populate the Biobank

• Identify opportunities for Society-led collation of tissue samples, e.g., conferences.
• Liaising with both internal teams and external stakeholders to coordinate Biobank recruitment events.
• Liaising with senior staff in the Society to develop, apply for, and amend as required IRB approvals for tissue sampling through the Society.
• Refine as required SOPs for marketing, consent, data capture, sampling, sample handling on site at events, and sample transfer to the Biobank.
• Ensure sufficient communication between your team and other departments to allow smooth 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

• Demonstrate a minimum of 2 years’ project lead administrative experience, preferably in the field of research.
• Must possess excellent verbal and written communication skills, able to effectively convey messages to across both study team members and external stakeholders.
• Demonstrate good problem-solving, organizational, and leadership skills.
• Show the ability to work with little supervision, managing multiple responsibilities to timeframes or deadlines.
• Have the ability to always pay keen attention to detail, notably regarding data completeness and integrity.
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.
• Have experience of database administration, preferably (but not essentially) REDCap.
• 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, Zoom Phone, Zoom & Teams.
• The ability to work in a virtual team setting and work independently.
• Ability to occasionally work evenings and weekends to prepare for in-person Society events.
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.
• Coordinate and attend global biobank recruitment events, representing the organization and supporting participant engagement initiatives.
• Ability to travel for one in-person staff retreat annually
• Ability to travel to other in-person 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: 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: Senior Partnerships Coordinator

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

Location: US or US, Remote Based

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

Salary: Up to £33,500 / $46,500 per annum (depending on location)

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 Partnerships Coordinator plays a pivotal role in supporting the organization’s revenue and relationship-building goals by developing and managing corporate and community partnerships. This position focuses approximately 70% on corporate partnerships and 30% on fundraising administration, contributing directly to revenue generation, relationship stewardship, and the seamless execution of development activities.

Key Responsibilities/Essential Functions

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

Corporate Relationship Coordination

• Identify and research prospective corporate partners aligned with the Society’s mission.
• Partner with the Senior Partnerships Coordinator to manage the corporate partnerships pipeline, including cause-marketing and strategic collaborations.
• Prepare customized partnership proposals, pitch decks, and partnership materials.
• Serve as a contact for partners, managing communications, renewals, acknowledgments, benefit fulfillment, and impact reporting.
• Track activities, revenue, and engagement in the CRM; create and maintain SOPs for partnership workflows.
• Standardize administrative processes for prospecting, outreach, onboarding, stewardship, and renewals to ensure efficiency and scalability.
• Collaborate with communications, events, and program teams, staying current on corporate philanthropy trends.

Fundraising Administration

• Support gift processing, acknowledgements, and coordination with the Development Director for timely handling.
• Maintain accurate donors and corporate records in the CRM, ensuring data integrity and compliance.
• Prepare fundraising reports, dashboards, and summaries for leadership and audits.
• Provide administrative support for fundraising campaigns, including material preparation and follow-up.
• Ensure adherence to donor restrictions, gift agreements, contracts, and reporting requirements.
• Create and maintain SOPs for fundraising administrative workflows, including gift processing, acknowledgements, data entry, reporting, and record management.

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 or equivalent experience in nonprofit development, fundraising, marketing, or related field.
• Proven experience in corporate partnerships, development coordination, or fundraising administration.
• Proficiency in CRM systems and experience with fundraising databases is preferred.
• Strong organizational, communication, and project management skills.
• Strategic thinking, multi-tasking, and the capacity to meet coinciding deadlines.
• Independence in working and collaborating effectively within a virtual team setting.
• Ability to work evenings and weekends to prepare for Society events.
• Proficiency in compiling and presenting clear and effective reports to all levels of stakeholders, both internally and externally.
• Experience with donor management systems and data analysis tools.
• 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, Zoho Voice, Zoom & Teams.
• The ability to work in a virtual team setting and work independently.
• Ability to occasionally work evenings and weekends.
• Stable internet connection is required for video calls & cloud-based services as this is a fully remote role.
• Travel to and attend one in-person staff retreat (UK based).
• Travel to and attend other in-person 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.

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: RT26 Project Manager

Location: UK, Remote Based

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

Contract: Four (4) month Fixed-Term (August 3 – November 30, 2026)

Salary: £27,000 – £30,000 (annual equivalent, DOE)

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 Road to 2026 (RT26) Project Assistant is responsible for supporting the day-to-day delivery of the RT26 initiative by ensuring work is progressed, tracked, and kept up to date across all workstreams.

Working closely with the RT26 Project Manager, this role acts as a central point for maintaining accurate program information, following up on actions, and ensuring that tasks, timelines, and outputs remain aligned.

The postholder plays a key role in keeping the program organised and on track by maintaining reliable trackers and documentation, ensuring clarity on ownership and next steps, and identifying gaps, delays, or inconsistencies early so they can be addressed.

Key Responsibilities/Essential Functions

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

Execution & Delivery Support

• Complete assigned tasks across RT26 workstreams, including updating materials, documentation, and shared resources, to keep work moving forward.
• Prepare and maintain core project outputs (e.g. trackers, documents, coordination materials) so they are accessible, up to date, and ready for use.
• Ensure all material are clearly organized and accessible to the right stakeholders.
• Deliver tasks to a high standard ad within agreed timelines, flagging early if deadlines are at risk.

Coordination & Follow-Up

• Actively follow up with teams on actions, inputs, and deliverables to ensure work is progressing to agreed timelines.
• Track progress across workstreams and keep central trackers up to date with the latest status and updates.
• Chase outstanding actions and clarify any gaps, ensuring all tasks have clear ownership and next steps.
• Provide regular, structured updates to the Project Manager on progress, risks, and any blockers requiring escalation.
• Ensure teams are clear on priorities, responsibilities, and deadlines by reinforcing next steps and confirming understanding.

Program Support & Information Management

• Review materials, trackers, and outputs to ensure they are complete, accurate, and consistent before being shared or used.
• Identify missing information, unclear ownership, or inconsistencies across workstreams and follow up to resolve them.
• Monitor progress against timelines and flag delays, risks, or misalignment early to the Project Manager.
• Maintain an accurate and up-to-date central view of program progress across all workstreams.

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

• Experience in a coordination, project support, or delivery-focused role within a fast-paced environment.
• Experience supporting work across multiple stakeholders, teams, or workstreams with competing priorities.
• Experience maintaining trackers, documentation, or shared systems used to manage delivery.
• Experience using strong judgment in prioritizing tasks, especially when information is incomplete or timelines shift.
• Experience acting as the “source of truth” for project status and documentation.

Skills & Competencies

• Highly organized with the ability to manage multiple tasks, deadlines, and priorities without losing detail.
• Proactive and persistent, follows up on actions, chases inputs, and ensures work is progressed.
• Able to work effectively with a range of stakeholders across functions, seniority levels, and time zones.
• Strong written and verbal communication skills, with the confidence to ask for updates, clarify gaps, and follow up with different stakeholders maintaining positive working relationships.
• Comfortable working independently while staying closely aligned with a Project Manager and wider team.
• Ability to adapt communication style based on audience.
• Able to identify missing information, inconsistencies, or delays, and take action or escalate appropriately.
• Confident maintaining trackers, documentation, and shared tools, ensuring information is accurate and up to date.
• Comfortable structuring information in a way that improves visibility and decision making.
• Ability to independently resolve issues where appropriate, while recognizing when to escalate risks or blockers.
• Comfortable constructively challenging unclear inputs, timelines, or ownership to maintain delivery quality.
• Proficient in Microsoft Office (Outlook, Word, Excel, PowerPoint) and collaboration tools such as Monday.com, Zoom, and Slack.
• Comfortable working in a remote, global, fast-paced organization.

Work Environment & Travel Requirements

• Fully remote; must be based in the 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 key delivery moments.

Preferred Experience & Qualifications

• Experience supporting complex or multi-stream projects with multiple stakeholders.
• Familiarity with project management tools (e.g., Monday.com, Asana, Jira) to track tasks, dependencies, and timelines.
• Experience working in mission-driven or nonprofit environments.
• 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.

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.

Reports to: Creative and Digital Communication Director

Location: UK (Remote)

Working Hours: Full-Time, 40 hours per week, 9AM-5PM GMT/BST

Contract: Fixed-Term Contract (12 months with annual review)

Salary: £27,000 per annum

Revised: June 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 Ehlers-Danlos Society is seeking a creative and detail-oriented Creative Artworker to produce engaging visual content that brings our mission to life. This role is responsible for creating high-quality artwork and campaign assets while ensuring consistency across all brands, fundraising, and awareness initiatives, including social media, websites, program materials, presentations, events, and wider organizational communications.

Working closely with the Design & Communications team, the successful candidate will play a key role in shaping and strengthening the organization’s visual identity. They will have proven experience in producing artwork for both print and digital channels, with a strong understanding of design principles, brand application, and accessible communication.

This is an exciting opportunity to contribute fresh ideas, creative expertise, and technical precision to a diverse range of projects throughout the year. The ideal candidate will thrive in a collaborative, fast-paced environment, confidently managing multiple priorities while maintaining exceptional standards of design quality, accuracy, accessibility, and brand consistency across every touchpoint.

Key Responsibilities/Essential Functions

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

Creative Artwork

• Translate project briefs into compelling, accurate, and engaging visual assets that align with brand guidelines, campaign objectives, and organizational priorities.
• Create high-quality print and digital materials, including campaign assets, social media content, presentations, event collateral, publications, and marketing materials.
• Contribute to the design and ongoing development of the organization’s digital channels, including websites, email communications, and social media platforms.
• Ensure that all creative outputs are visually consistent, on-brand, and aligned with established visual identity standards.
• Apply accessibility best practices and WCAG guidelines across all design work.
• Prepare, adapt, and finalise artwork for a range of formats and channels, maintaining exceptional attention to detail throughout the production process.
• Manage artwork projects from concept to delivery, ensuring outputs meet the highest standards of creativity, quality, accuracy, and effectiveness.

Project Delivery

• Take ownership of artwork and graphic content for assigned programs and projects, ensuring deliverables meet both creative and strategic objectives.
• Collaborate with the Design & Communications team and wider organization on projects of varying scale and complexity.
• Maintain and apply brand guidelines to ensure consistency and cohesion across all visual communications.
• Develop and implement creative solutions that support the organization’s mission and strengthen its visual presence.
• Manage multiple projects simultaneously, prioritizing workload effectively to meet deadlines and stakeholder expectations.
• Respond to day-to-day design requests through the graphics ticketing system, producing presentation materials, promotional assets, and internal communications that align with project requirements and organizational objectives.

Creative Collaboration & Workflow

• Work closely with the Creative & Digital Communications Director to plan, prioritize, and deliver projects on time and to a consistently high standard.
• Contribute to a collaborative, creative, and solution-focused team culture that promotes excellence across all visual communications.
• Partner with colleagues to balance workloads, share expertise, and ensure the efficient delivery of projects, particularly during peak campaign periods and events.
• Support effective briefing, project management, and production processes through the graphics ticketing system and established workflows.
• Ensure all materials reflect the organization’s tone, mission, and communication objectives.
• Stay informed of design trends, accessibility developments, and emerging creative practices, bringing new ideas and continuous improvement to the 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

• Education & Knowledge
• Bachelor’s degree in graphic design, motion graphics, or a related field, or an up-to-date portfolio showcasing relevant skills.
• Strong proficiency in Adobe Creative Suite (Photoshop, Illustrator, InDesign).
• Proficiency in Microsoft Office Suite (Outlook, Word, Excel, PowerPoint).
• Proven experience working in a creative artwork position.

Communication & Interpersonal Skills

• Excellent planning, organizational, and multitasking abilities, with the capacity to prioritize tasks and meet tight deadlines.
• Strong attention to detail, accuracy, and consistency across all outputs.
• Ability to work independently and collaboratively within a remote team environment.
• A conceptual thinker who approaches work logically and systematically.
• Proven ability to take ownership of projects, from brief to final delivery.
• Comfortable working in a fast-paced environment with quick turnarounds.
• Strong interpersonal skills; a collaborative, team-oriented mindset.
• Be a collaborative team player with excellent interpersonal/communication skills.
• Interest in Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) is a plus but not required.

Work Environment and Travel Requirements

• Must be eligible to work in the UK 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.