Trustee (Lived Experience)

Encephalitis International

Trustee (Lived Experience)

Voluntary role | Remote with occasional meetings

Encephalitis International is the world’s leading charity dedicated to improving the lives of people
affected by encephalitis through awareness, support and research. Each year encephalitis affects
hundreds of thousands of people worldwide, often leaving survivors and families facing significant
long-term challenges.

We are seeking to recruit a Trustee with lived experience of encephalitis to join our Board.

This is a particularly important role within our governance. We want to ensure that the voices and
experiences of those directly affected by encephalitis help guide our strategy, priorities and work.

We welcome applications from individuals who are:

•  A survivor of encephalitis, or
•  A parent, family member or caregiver of someone affected by encephalitis.

We are especially keen to hear from candidates from under-represented and diverse backgrounds
and communities, including those currently under-represented in charity leadership. Encephalitis
affects people everywhere, and we want our Board to better reflect the communities we serve.

The Role

As a Trustee, you will help shape the strategic direction and governance of Encephalitis
International. Trustees share collective responsibility for the organisation’s performance,
sustainability and impact.

You will:

•  Contribute lived experience insights to Board discussions and decision-making
•  Help ensure our work reflects the needs of patients, survivors and families
Support the charity’s strategic development and oversight
•
•  Act as an ambassador for the organisation and its mission

You do not need previous trustee experience. We are committed to supporting and developing new
trustees.

What We Are Looking For

We are particularly interested in people who bring:

•  Personal experience of encephalitis as a survivor or caregiver
•  A passion for improving outcomes for those affected by the condition
•  The ability to contribute to thoughtful discussion and decision-making
•  A willingness to work collaboratively as part of a committed Board

Time Commitment

•  Approximately 4–6 Board meetings per year (usually virtual) with one in-person away-

weekend.

•  Occasional participation in sub-committee meetings or attendance at our events
•  Preparation time for meetings

Encephalitis International is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 04189027. Registered Charity No. 1087843. Registered Charity in Scotland: SC048210.

This is a voluntary role, though reasonable expenses will be reimbursed.

Why Join Us?

By joining the Board of Encephalitis International you will help shape the future of a growing global
organisation that is leading efforts to improve diagnosis, treatment, support and research into
encephalitis worldwide.

Most importantly, you will help ensure that the lived experiences of patients and families remain at
the heart of everything we do.

How to Apply

To express interest, please send a short statement outlining your interest in the role and your
connection to encephalitis along with your CV to ava@encephalitis.info

Encephalitis International is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 04189027. Registered Charity No. 1087843. Registered Charity in Scotland: SC048210.