Charitable Purposes Committee Member

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.

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.

About the Organisation
DEBRA was the world’s first EB patient support group, set up in 1978. We have come a long way since then, working internationally through a network of nearly 50 DEBRA groups to share information and best practice. We fund pioneering research, provide specialist healthcare, promote international best practice, and deliver lifelong support to individuals, families, and the entire EB Community.

Diversity
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. Applications from these communities would be welcomed.

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 are particularly encouraging applicants who have experience of operating within the NHS, have worked with charities that run a health/support service (including hospices), practising specialty health professionals (e.g. physiotherapists, podiatrists, or dieticians) or applicants with experience as a GP.

Essential Skills
Experience of one or more of these fields, Healthcare, Medicine, Health Tech, Nursing, Pharmaceuticals, Research, Social Care, 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 [email protected] 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.