We would love your help spreading the word, or even considering the opportunity yourself.

We are a “small but determined international charity supporting patients, families, and carers affected by neuroacanthocytosis (NA) syndromes”. As our work grows, so does the need for strong, thoughtful governance. That’s why we’re looking for individuals who can bring insight, compassion, and a commitment to impact.

Who We’re Looking For

We welcome applicants from all backgrounds, but we are especially keen to hear from people based in the UK. We are looking for the willingness to contribute your time, skills, and perspective. Our 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 currently have openings for:

2 x Trustee for supporting strategy, governance, outreach, and patient-centred decision-making. Full role description: https://naadvocacy.org/wp-content/uploads/2026/02/Trustee-Role-description-Nov-2025.pdf 

1 x Trustee with specific fundraising knowledge / background, for helping shape our fundraising strategy, donor engagement, and income development. Full role description: https://naadvocacy.org/wp-content/uploads/2026/02/Trustee-Fundraising-Role-description-Nov-2025.pdf

Both roles are flexible, virtual, and designed to fit around other commitments.

Why Join Us?

Becoming a trustee is a meaningful way to make a difference. You’ll help guide a charity working in an ultra‑rare, deeply underserved area, collaborate with a passionate international team, and contribute to a future where NA syndromes are better understood and better supported.

How You Can Help

Consider expressing interest if the role resonates with you.

Share this opportunity with colleagues, friends, or networks who may be a good fit.

If you’d like to express interest or learn more, please contact: 
Despina Dinca, Charity Manager — despinadinca@naadvocacy.org.