Community Engagement Officer

 
Job Title: Community Engagement Officer 
Location: Remote with frequent travel (must be UK-based)
Reporting To: Advice and Support Lead 
Hours: Full-time 
Salary: £26,000 - £28,000 
Contract Type: Permanent  

About Us 

Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs. 

We are a small but mighty team providing individual support, advice and connection to the over 40,000 living with an IMD in the UK and more across the world. We have a strong interest in rare disease policy and campaign for the rights of our rare disease community for better healthcare services, access to treatment and to be able to live well everyday.  

Role Overview 

MSUK are seeking a passionate and proactive Community Engagement Officer to strengthen and grow our patient and family community. There are over 1500 IMDs and many of our community use social media, other patient groups and in-person events to connect and learn. This role is central to how we engage with the people we support — through social media, community groups, events, and collaborative partnerships. You’ll be the bridge between our charity and the people we serve, helping to build a supportive, inclusive, and informed community.  

Key Responsibilities 

Engagement & Social Media 

• Manage and monitor all online patient communities responding to community messages and comments with empathy and timeliness 

• Moderate relevant support online community groups, ensuring they are safe, active, and welcoming spaces 

• Identify themes and areas of interest to advocate internally for MSUK response to meeting community need 

• Signpost our Individual Support service, identify and flag individual enquiries to the Individual Support Lead 

• Working with our Campaign & Comms Lead, grow the charity’s presence across social media platforms (e.g., Facebook, Instagram, LinkedIn, X, TikTok) 

• Develop content that resonates with patients, families, and supporters, amplifying community stories and voices 

• Build and manage our lived experience co-production group ‘Metabolic Advisory Council’ 

Community Insight & Advocacy 

• Functioning as the ‘internal expert’ on IMD communities for all MSUK team members 

• Using our Contact Record Management system to log and manage community database to provide timely, relevant insight to team members when required 

• Work with Head of Insight & Advocacy to engage and support communities in relation to timelines for insight work 

Events & Campaigns 

• Plan, organise, and execute online and in-person community events (support groups, awareness days, family meetups, annual conference) 

• Collaborate with the team to deliver campaigns around awareness, fundraising, and education 

• Work with Virtual Support Assistant to coordinate speakers, logistics, communications, and follow-ups for all events with  

Relationship & Partnership Management 

• Build and maintain relationships with other patient advocacy groups, charities, and health organisations 

• Represent the charity at external events, meetings, and forums relevant to the rare disease space 

• Seek opportunities for collaboration, knowledge sharing, and joint initiatives 

Community Fundraising 

• Work with Fundraising lead on community support for individual and events fundraising including event research, donor journey support and online promotion 
   

Person Specification 

Essential 

• Experience managing online communities and/or social media platforms in a professional or volunteer capacity 

• Excellent written and verbal communication skills 

• Strong organisational skills and event planning experience 

• Empathetic and sensitive to the lived experiences of patients and carers 

• Ability to work independently, from home, and as part of a small, dynamic team 

• Confident, keen to travel and enjoys in-person events and networking  

Desirable 

• Personal or professional experience within the rare disease, health, or charity sectors 

• Experience managing partnerships or external relationships 

• Familiarity with tools such as Canva, Mailchimp, Eventbrite, or similar 

What We Offer 

• A supportive and flexible working environment. 

• Opportunities for personal and professional growth. 

• The chance to make a tangible impact in the lives of people affected by rare diseases.