Head of Fundraising & Communications

About Metabolic SupportMetabolic Support is the UK umbrella patient organisation for people affected by Inherited Metabolic Disorders (IMDs) – rare, lifelong genetic conditions affecting around 40,000 people in the UK and over 1.4 million worldwide. Since 1981, we have been at the forefront of rare disease advocacy, research, newborn screening and community support, empowering people with IMDs to live well.
About the RoleThis is a senior, strategic and hands-on role leading our fundraising and communications activity. You will drive sustainable income growth, raise our profile nationally and internationally, and tell our community’s stories with clarity, compassion and impact.
Working closely with the Chief Executive, you will shape and deliver an ambitious fundraising strategy, develop diverse income streams, and build strong relationships with trusts, foundations, corporates, major donors and supporters. You will also lead our communications and brand, ensuring consistent, high-quality messaging across all channels.
As part of a small, agile team, this role suits a confident self-starter with emotional intelligence, strong leadership skills and a passion for making a tangible difference in rare disease.
Key Responsibilities
- Lead and deliver an integrated fundraising and communications strategy
Lead and deliver an integrated fundraising and communications strategy
- Grow income across trusts & foundations, corporate partnerships, individual giving, major donors, community and events
Grow income across trusts & foundations, corporate partnerships, individual giving, major donors, community and events
- Act as an external ambassador for Metabolic Support
Act as an external ambassador for Metabolic Support
- Oversee communications, marketing, social media and brand development
Oversee communications, marketing, social media and brand development
- Manage donor relationships, stewardship and CRM (Nutshell)
Manage donor relationships, stewardship and CRM (Nutshell)
- Provide fundraising forecasts, reports and budgets to the Board
Provide fundraising forecasts, reports and budgets to the Board
- Ensure compliance with GDPR and fundraising regulations
Ensure compliance with GDPR and fundraising regulations
- Proven experience in fundraising, communications or income generation
Proven experience in fundraising, communications or income generation
- Strong track record in at least one key fundraising area (e.g. trusts, corporates, major donors)
Strong track record in at least one key fundraising area (e.g. trusts, corporates, major donors)
- Excellent written and verbal communication skills
Excellent written and verbal communication skills
- Confident relationship-builder and storyteller
Confident relationship-builder and storyteller
- Highly organised, proactive and comfortable working autonomously
Highly organised, proactive and comfortable working autonomously
- Strong alignment with Metabolic Support’s mission and values
Strong alignment with Metabolic Support’s mission and values
Other Information
- UK-based with eligibility to work in the UK
UK-based with eligibility to work in the UK
- Willingness to travel and work occasional evenings/weekends
Willingness to travel and work occasional evenings/weekends

This role creates positive change by driving sustainable income growth for Metabolic Support, raising the organization's profile nationally and internationally, and telling the community's stories with clarity, compassion and impact to support people affected by Inherited Metabolic Disorders.

Required skills and experience:

• Proven experience in fundraising, communications or income generation
• Strong track record in at least one key fundraising area (e.g. trusts, corporates, major donors)
• Excellent written and verbal communication skills
• Confident relationship-builder and storyteller

No specific benefits, compensation, or perks mentioned in the job description.