Syndrome Support jobs

Position: CORE Coordinator

Reports to: Research Programs Director

Location: UK or US, Remote Based

Working Hours: Full-Time, Monday-Friday, 9AM-5PM ET/GMT

Salary: £27,000 / $36,000 per annum (depending on location)

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

Revised: November 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. 

Program Overview

The CORE Network program is a global, multi-site initiative designed to build clinical capacity in EDS and HSD through structured, practice-based medical internships hosted at participating care sites. 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 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 Coordinator supports the delivery and day-to-day operation of the CORE program, working under the direction of the Research Programs Director until a CORE Manager is appointed.

The role focuses on coordinating program activities, maintaining accurate documentation, supporting site engagement, and ensuring that agreed processes and timelines are followed. The Coordinator plays a key role in enabling smooth program delivery by supporting communication, tracking activity, and contributing to the capture of insight and learning across the CORE Network.

Success in the role is defined by reliable program administration, strong organizational skills, and the ability to support internal CORE staff and participating sites through consistent coordination and follow-through.

Key Responsibilities & Essential Functions

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

Program Coordination & Operational Support

• Support the day-to-day coordination of CORE Program activities, working to agreed plans, timelines, and priorities set by the lead.
• Assist with scheduling, logistics, and coordination across internal and external stakeholders.
• Track program activity, milestones, and follow-up actions, ensuring information is accurate and up to date.
• Maintain program documentation, guidance materials, and records in line with agreed processes and quality standards.

Site & Stakeholder Management

• Facilitate communication with CORE sites, ensuring timely reporting, information sharing, request processing, and updates.
• Assist with start-up processes for new sites, including documentation, orientation materials, and coordination of internal team collaboration.
• Respond to routine queries from sites and stakeholders, escalating issues or uncertainties as appropriate.
• Support coordination with internal teams to ensure sites receive required inputs and information.

Data, Insight, and Reporting Support

• Support the collection and organization of data and insights.
• Maintain accurate records to support monitoring, evaluation, and reporting.
• Assist with preparation of summaries, updates, and draft reports for internal and external use.
• Contribute to the proactive identification of emerging issues, patterns, or learning from program delivery.

Continuous Improvement and Professional Development

• Apply feedback and learning to improve program delivery, coordination, documentation, and support.
• Actively develop personal capability relevant to the role, including understanding of EDS and HSD, clinical workforce development, and program coordination for best practices.
• Stay informed about tools, processes, and approaches that support effective program delivery and apply learning under the guidance of internal CORE staff.

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 supporting or coordinating programs, projects, or initiatives within healthcare, research, education, or nonprofit contexts.
• Familiarity with working in structured programs with defined processes, timelines, and reporting requirements.
• Experience engaging with external stakeholders or partners in a coordination or support capacity.
• Ability to work with sensitive or regulated information and follow established procedures.

Skills & Competencies

• Strong organizational skills and attention to detail.
• Ability to manage multiple tasks and priorities while meeting deadlines.
• Clear and professional written and verbal communication skills.
• Ability to follow established processes and escalate issues appropriately.
• Confidence working with digital tools and learning new systems.
• Ability to work independently while collaborating effectively within a remote team.

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 commitment to developing subject-matter expertise in understanding these areas.
• Experience supporting clinical education, internships, or training-related programs.
• Familiarity with registries, data collection, or research participation processes.
• Experience working across international or cross-cultural contexts.
• Comfort supporting basic data tracking, reporting, or documentation processes.
• Familiarity with HIPAA and GDPR is preferred (training provided).

Diversity Statement  

The Ehlers-Danlos Society is committed to building an inclusive and supportive workplace, guided by our values of being Supportive, Inclusive, Collaborative and Accountable. As a global organisation dedicated to advancing research, education and access to care for individuals affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), we recognise the importance of diverse perspectives, experiences and backgrounds in achieving our mission. We seek to increase opportunities for individuals from diverse backgrounds and are committed to fostering an inclusive culture that celebrates the different voices within our team and the wider community we serve. The Ehlers-Danlos Society actively recruits, employs, trains, compensates and promotes individuals fairly, regardless of race, nationality, ethnicity, sex, gender identity, marital or civil partnership status, caring responsibilities, disability, age, social class, sexual orientation, religion or belief, or any other characteristic protected by applicable law.

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

Pay: £27,000.00 per year

Benefits:

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

Application question(s):

• To be considered for this role, please apply directly using The Society's application form here - https://wkf.ms/4iQV0uY

Work Location: Remote