Job Description

Position: CORE Network of Excellence Coordinator (CORE Network Coordinator)

Reports to: Research Data & Access Director

Location: USA or UK, Remote Based

Working Hours: Full-Time, 9-5 EST/GMT

Contract: Fixed-Term Contract (12 Months)

Salary: $35,000 / 26,000 per annum (dependent on location)

Revised: March, 2025

Organization Overview

The Ehlers-Danlos Society's mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.

Overview of Responsibilities

The CORE Network Coordinator provides essential administrative and coordination support to the research team, managing communications, scheduling, documentation, and stakeholder engagement. The position manages member engagement and communication, oversees the application and review process, and maintains accurate records in systems such as REDCap and Monday.com. It plays a key role in facilitating multi-site collaborations, relationship management, and ensuring governance and compliance The role also assists with research activities, registry integration, and event coordination, including the CORE Annual Meeting and member meet-ups. This individual ensures that all operations align with organizational standards for quality, confidentiality, and compliance (GDPR and HIPAA).

Key Responsibilities/Essential Functions

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

CORE Network of Excellence Program Administration

Engage with CORE Network members to assist with program activities, answer questions, and resolve issues, via platforms such as email, phone, and Slack Maintain the CORE Network roster, ensuring eligibility of members and working across teams within the Society to provide a seamless process Facilitate all aspects of the CORE membership application process, including direct applicant correspondence and coordination across Society teams. Organize applicant materials for approval by the independent CORE Review Committee Assist the Research Data & Access Director with research activities within the CORE Network Collaborate with the Registry Coordinator in managing CORE Network research recruitment activities, such as CORE utilization of the 3rd Party Access process or recruitment activities into the Society's Global Registry and Global Biobank programs Assist with all aspects of hosting the CORE Network Annual Meeting & CORE Meet-Ups, including event correspondence, registration, speaker assistance and post-event materials. Complete data entry and quality control tasks on REDCap and/or Monday.com
Governance and Multisite Coordination

Coordinate administrative oversight of multi-site agreements and approvals, such as non-disclosure, data sharing agreements and IRB applications Track important program milestones and deadlines, ensuring response from CORE Network members and external stakeholders
Department Administration

Provide administrative support to the research team, such as coordinating meetings, materials, taking minutes and drafting and distributing agendas and actions. Undertake daily administrative tasks to ensure coordination of the research team's activities, ensuring use of relevant governance frameworks. Contribute to the Research Department's commitment to all areas of work carried out within the research department maintaining GDPR and HIPAA compliance. Provide day-to-day management of shared Society mailboxes and phone line, escalating issues to team leads as needed. Ensure accurate and timely records are maintained within REDCap & Monday.com. Maintaining detailed, up-to-date records.
Work Environment

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society's work, staff may be required to travel to company events, meetings, and conferences as well as some weekend work.

Requirements

Proven administrative experience in a cross-functional environment, preferably within research/care delivery and/or a nonprofit environment. Experience with handling confidential information. Experience with REDCap Strong attention to detail Excellent communication skills, with the ability to converse across a range of stakeholders. 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 required for video calls & cloud-based services as this is a fully remote role. Travel to and attend our in-person staff retreats (UK & US based). Travel to and attend our in-person annual Global Learning Conference, and other events as required from time to time.
Preferred Skills

Experience coordinating multisite programs/studies and/or international stakeholder management In addition to English, an intermediate or higher proficiency in another language Qualitative analysis experience using software such as NVivo An interest in EDS/HSD or rare disease would be beneficial
Diversity Statement

The Ehlers-Danlos Society's commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. - providing care, access, research and education in all that we do. We are a global, multicultural organization, as such we seek to increase opportunities for individuals from diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates, and promotes opportunities regardless of race, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.

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

Pay: 26,000.00 per year

Benefits:

Additional leave Casual dress Company events Health & wellbeing programme Life insurance Sabbatical Work from home
Application question(s):

To be considered for this role, please apply directly using The Society's application form here - https://wkf.ms/47bttyr
Work Location: Remote