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Page 4 of 12
Remote
£35,000 - £40,000 per year FTE
Part-time (14-18 hours a week)
Permanent

Using Anonymous Recruitment

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Job description

We are seeking a part-time Charity Manager to lead the day-to-day delivery of our work.

XLH UK are a small UK patient charity supporting people affected by X-linked hypophosphataemia (XLH), a rare genetic condition which affects people of all ages. This is a varied, people-focused role, ideal for someone who enjoys coordinating activity, working with volunteers and partners, and making a tangible difference in a small organisation.

What You’ll Do

  • Coordinate volunteers and contractors supporting community engagement
  • Manage charity communications and website
  • Liaise with healthcare professionals, researchers and partners
  • Support awareness, advocacy and pathways to best care
  • Monitor and support public fundraising and grant applications
  • Lead delivery of our annual community event
  • Maintain systems, data and meeting administration

What We’re Looking For

  • A self-starter with strong organisational and communication skills
  • Experience working in a charity, health or community setting
  • Competent IT literacy, for remote management using Microsoft solutions
  • Confidence to coordinate people and projects
  • An interest in patient advocacy and improving healthcare pathways

What We Offer

An opportunity to build upon the record of success of this friendly charity, plus

· Flexible working hours and location

· A supportive trustee board

· A meaningful role with visible impact for patients and families

Our Values

The mission of XLH UK is to help those with XLH and their families through research, support and advocacy. Our core values – accountability, integrity and transparency – underpin our organisation.

XLH UK is a friendly and inclusive organization and actively promotes equality of opportunity for all. We welcome all applications from a wide range of candidates.

Application Instructions

Please include contact details for two referees on your CV.

Organisation
XLH UK View profile Organisation type Registered Charity

Our mission is to help those with XLH and their families through research, support and advocacy.

Posted on: 20 February 2026
Closing date: 13 March 2026 at 14:56
Tags: Advice / Information, Advocacy, Volunteering Management, Engagement / Outreach, Health / Medical, Partnerships, Research, Events / Activities

The client requests no contact from agencies or media sales.