Trustee - Fundraising

Trustee: Fundraising

Help guide a rare disease charity through its next chapter

As a small but passionate UK-based charity, we are seeking a Trustee with a background in fundraising to help us build sustainable income streams. With no current UK-based staff and limited resources, your expertise will be instrumental in helping us grow our fundraising capacity and secure vital funding for research, family support, and advocacy.

In this role, your responsibilities could include:

• Leading the development and implementation of a fundraising strategy
• Identifying and pursuing grant opportunities, corporate partnerships, and individual giving campaigns
• Supporting the creation of compelling fundraising materials and donor communications
• Ensuring compliance with relevant fundraising regulations and best practices

What We’re Looking For

We are particularly interested in individuals with experience in:

• Charity fundraising (individual giving, trusts and foundations, corporate sponsorships)
• Grant writing and bid development
• Strategic planning and income generation
• Building donor relationships and stewardship
• The UK charity sector, including knowledge of fundraising regulations

Soft skills we value include:

• The ability to evaluate diverse viewpoints
• The willingness and flexibility to support the Board with a range of tasks
• Adaptability to shifting priorities and deadlines

We particularly welcome applications from individuals with lived experience of rare diseases. However, this isn’t essential.

Why join Us?

• “The charity gives me hope and comfort that someone is working tirelessly to help find a cure for our children.” - Dan, parent of a six-year-old diagnosed with SLC6A1
• “The charity is the only resource available to myself and my family with knowledge of my son's rare genetic disease. It provides emotional support, in addition to offering relevant information and referrals to other professionals and families. By collaborating through this network, we are better positioned to pursue a cure or treatment.” - Helen, parent of an individual diagnosed with SLC6A1 at the age of 30
• “Volunteering with SLC6A1 Connect UK has given me a sense of purpose and belonging during a journey that can often feel isolating. Being part of this community means connecting with others who truly understand, sharing hope, supporting vital research, and working together to create a better future for our children.”

You’ll be joining a charity that is:

• Led by lived experience
• Focused on impact and innovation
• Ready to grow with your guidance

What We Offer

• The opportunity to shape the future of a rare disease charity 
• The chance to develop a fundraising strategy from scratch

·        The platform to advocate nationally and build networks

The possibility to use your skills for good

FAQs

•  “I don’t think I have enough time.”

We estimate around 4-6 hours per month, including quarterly board meetings and one strategy day per year.

• “I’ve never been a trustee before.”

We welcome all backgrounds and provide support to help you succeed.

This role is advertised as part of TPP's Free Giving Back Services. This volunteer advertisement copy has been supplied to TPP and applicants apply direct to the organisation. Please contact the organisation directly if you have any questions about this volunteer role.