DEBRA is seeking members for its Charitable Purposes Committee to inform to inform and develop the Charity’s evolving care and research strategy. Our Charitable Purposes Committee advises our Board of Trustees and is responsible for ensuring that the Charity’s resources are used effectively to support our provision of lifelong care and support for sufferers of the genetic skin disorder Epidermolysis Bullosa, and to support our investments in cutting edge research to find a cure for this debilitating condition.

Key responsibilities of the Charitable Purposes Committee are to:

• Review DEBRA UK’s Research & Care Strategy as it relates to research, health and community support and social policy on an ongoing basis.
• Receive and review reports from medical and scientific experts on current research activities.
• Determine, taking appropriate advice, the priorities for care and research expenditure each year.
• Oversee collaborative partnerships on care and research.
• Develop membership engagement, support and services.
• Review and develop healthcare initiatives to support member care.
• Receive reports on changes in national policy or practice within health and social care and agree appropriate responses from the Charity.

DEBRA’s Head Office is based in Bracknell, Berkshire, our membership is spread across the UK. To be truly representative of that membership we encourage applicants from anywhere in the UK and committee members can access meetings virtually. We provide any training necessary to allow you to fulfil your committee duties. This is an unpaid volunteer role, but any reasonable travel expenses will be reimbursed in line with the Charity’s expenses policy. Meetings of the Charitable Purposes Committee currently take place four times a year, each lasting between 2.5-3 hours. The term of appointment is three years. S

Diversity

DEBRA is aware that studies have shown that women, people of colour and those living with a disability are less likely to apply for roles unless they believe they meet every single one of the qualifications as described in a job role. The charity is committed to building a diverse and inclusive environment and therefore welcomes applications from everyone regardless of age, gender, ethnicity, sexual orientation, faith or disability. The charity aspires to maintain a representative and diverse Board including women, individuals from ethnic and LGBTQIA communities and those living with disability. 

Selection Criteria

We’re looking to recruit people from a wide range of experiences and backgrounds. If you believe you have skills developed from your professional life combined with the proactivity, commitment and drive to make a difference and bring a new perspective we would love to hear from you.

We particularly welcome applications from GMC-registered dermatologists with experience in managing complex skin conditions outside of EB. Ideal candidates will bring a strong interest or proven expertise in genetics and/or genomics and clinical applications within dermatology. An understanding of rare diseases and the unique challenges faced by affected individuals and their clinicians is highly valued.

Essential Skills

• Experience in managing complex skin conditions outside of EB. Ideal candidates will bring a strong interest or proven expertise in genetics and/or genomics and clinical applications within dermatology
• Ability to challenge and to be a critical friend where necessary.
• Innovative and collaborative mindset.
• ‘Can do’ and positive attitude.

How to apply
If you think you can help steer DEBRA as we journey forward, please email HR@debra.org.uk to express your interest, and answer the following questions:

1. Why do you want to become a DEBRA Committee member?

2. What skills do you believe you can bring to the committee??

3. What experience will you bring to the committee?

You can send this submission as a written statement, a video or aural submission. DEBRA is committed to being an inclusive charity, and we welcome and encourage applications from all sections of the community. The successful candidate will need to undertake a DBS check and sign a non-disclosure agreement.