Trustee with professional skills

What will you be doing?

Trustees play a vital role in steering our charity, ensuring we remain mission-focused, financially sound, and responsive to the needs of our community. 

We are looking to improve all the areas of our organsation as we are implementing activities and programs as set out in our three-year strategy (2025-28). 

We welcome applicants with experience in communications, finance, governance, fundraising or other operational services who could support our charity focused on advocating for those affected by ultra-rare neurodegenerative NA syndromes. 

Our Board has a close relationship with the Charity Manager and prides itself on being passionate about rare disease advocacy and patient support. We are looking for trustees who are willing to contribute  their time, insight, and networks in a collaborative and proactive manner. 

What are we looking for?

Key Responsibilities

Provide strategic direction by contributing to the development and oversight of the charity’s three-year plan, fundraising strategy, and marketing and outreach efforts.  

Support good governance by ensuring the charity complies with its governing document, relevant legislation, and best practices in charity operations.  

Champion our mission and values, helping to uphold our commitment to compassion, collaboration, integrity, and innovation. 

Actively participate in quarterly board meetings (held virtually), reviewing papers in advance and contributing constructively to discussions and decisions. 

Serve as an ambassador for the charity, helping to raise awareness of NA syndromes and our work within your networks and professional circles. 

Support fundraising efforts by identifying opportunities, making introductions, or advising on strategy.  

Make introductions or connections where appropriate to individuals, organisations, or networks. 

Contribute to risk management and financial oversight, helping to ensure the charity remains sustainable and accountable. 

Advocate for patient and family perspectives, ensuring our work remains grounded in the lived experience of those affected by NA syndromes. 

Engage between meetings as needed, offering advice, reviewing documents, or supporting specific initiatives aligned with your expertise. 

Advise on fundraising strategy and donor engagement, helping us grow and diversify our income.  

Support the development of our monthly donor program and major donor cultivation plan.  

Identify potential funding opportunities, including grants, partnerships, and sponsorships.  

Help shape compelling fundraising messages,  ensuring clarity, emotional resonance, and impact. 

Uphold confidentiality and act in the charity’s best interest, avoiding conflicts of interest and maintaining the highest standards of integrity.  

What We’re Looking For :

• Passionate about rare disease advocacy and patient support
• Thoughtful, collaborative, and proactive
• Willing to contribute their time, insight, and networks
• Experienced in fundraising, communications, governance, research, or lived experience (any combination welcome). 

What difference will you make?

As a trustee with fundraising experience, you can help us grow and diversify our income. 

It's a great chance to gain deep personal satisfaction by making a meaningful difference in the lives of patients and families affected by the ultra-rare NA syndromes. Help us shape a future where the NA syndromes are better understood, treated, and ultimately cured. 

Our community is an incredibly collaborative and passionate environment, uniting international individuals and teams committed to compassionate advocacy and scientific progress.  

Additional information

You can download the following documents:

Before you apply

Your application will be considered on a rolling basis and we will get in touch with you as soon as possible after receiving and processing it. 

Interviews are likely to be held virtually, unless the candidate has easy access into London. Please note we will not be able to cover any travel expenses associated with the interview. 

We warmly welcome expressions of interest from individuals of all backgrounds, including those with lived experience of NA syndromes or other rare diseases.