Job Description

Job Overview

To support the CEO and wider team by managing communications, member engagement, and administrative processes. The postholder will help deliver regular communications, maintain accurate records, and ensure the smooth running of the charity's day-to-day operations.

Responsibilities

Communications & Engagement:

Plan and coordinate weekly newsflashes and quarterly newsletters. Support social media and website updates, maintaining consistent tone and branding. Liaise with member organisations and partners to gather stories, photos, and updates. Ensure contact lists and databases are accurate and GDPR-compliant. Support International Gaucher Day (IGD) and other awareness initiatives.

Administration & Coordination:

Schedule and prepare materials for board and committee meetings; take and distribute minutes. Manage general enquiries, membership forms, and contact submissions. Maintain and update organisational files and templates in Google Drive. Support the CEO with elections, policy reviews, and member updates.

Operational Support:

Coordinate documentation and follow-up with country representatives and partners. Track and report volunteer and staff hours for impact reporting. Assist in preparing annual reports and communications summaries.
Person Specification

Experience:

Experience in administration, communications, or charity operations. Experience working with people living with a rare disease or within a patient advocacy charity (desirable).

Skills & Knowledge:

Strong written and verbal communication; excellent organisation and attention to detail. Ability to manage multiple priorities. Experience using Canva, WordPress, or similar tools (desirable).

Communication:

Confident and empathetic communicator, able to liaise with international stakeholders. Experience supporting awareness campaigns or newsletters (desirable).

Technical:

Competent with Google Workspace or Microsoft Office. Understanding of GDPR and data management principles.

Attributes:

Proactive, reliable, and comfortable working independently in a small team. Knowledge or understanding of the rare disease community and its challenges.
Job Type: Temporary
Contract length: 12 months

Pay: Up to 17.50 per hour

Expected hours: 15 per week

Benefits:

Work from home
Application question(s):

o Application Closing date: 31 October 2025 Interviews: Week of 24 November 2025 Start date: Communications & Admin - 19 January 2026 CV must be accompanied by a letter outlining how you meet the Job Specification.
Work Location: Remote