Become a Trustee
Over 50% of DEBRA’s Board of Trustees are people with lived experience of EB, either living with the condition themselves, or close family members and carers. We are always looking for members who are interested in being a part of our Board or one of our Committees to help steer DEBRA and guide the decisions we make. We look for a mix of skills and experiences from the people on these committees, but you don’t need to have carried out a board-level role before. Your lived experience of EB is vital to ensure that we’re keeping members’ experiences at the heart of what we do.
Find out more about how we are governed and how to apply to become a trustee.
Join our Charitable Purposes Committee
We are currently looking for two passionate and experienced individuals to join DEBRA UK’s Charitable Purposes Committee and help shape the future of care, support, and research for people living with EB.
This is a unique opportunity to play a key role in how DEBRA invests in life-changing services and pioneering research, ensuring the best possible outcomes for the EB community. Working alongside experts and trustees, you’ll help guide strategy, review progress, and drive meaningful impact. With just four meetings a year and flexible virtual attendance, this is a rewarding way to use your skills and experience to make a real difference on a national scale. Get your applications in before the end of June 2026.
There are two roles:
- Engagement role: For individuals with experience in corporate engagement, public affairs, or healthcare communications, with a strong understanding of working with NHS bodies, government, industry, and senior stakeholders – Charitable Purposes Committee Volunteer – Engage – DEBRA UK
- Care role: For healthcare professionals with expertise in UK care pathways, chronic or rare conditions, and a commitment to holistic, person-centred care – Charitable Purposes Committee Volunteer– Care – DEBRA UK
UK-wide (virtual meetings)
4 meetings per year | 3-year term
Voluntary role (expenses reimbursed)
Our Committees
To support the board in decision making and to ensure best business practices, we have four board-level committees. Explore our committees and meet the members who are part of them.