DEBRA exists to serve the EB community. The EB community, living with or affected by EB, are at the heart of everything that we do. DEBRA values the experience, expertise, and views of the EB community and will engage and empower the members to have a voice in shaping DEBRAs strategy and charitable activities.

Table of contents

  1. Purpose
  2. Objectives
  3. Responsibilities
  4. Methods of engagement
  5. Related documents

1. Purpose

DEBRA is a member-centric organisation; we need and value the involvement of our members and the EB community in our work. This policy details our responsibilities, and how we will work collaboratively to ensure members and other stakeholders are given the opportunities to help shape and deliver DEBRA strategy and charitable activities, whilst ensuring members who become involved in organisational activity such as fundraising, marketing, communications and representing DEBRA are empowered, valued, respected, and supported by DEBRA staff.

2. Objectives

  • Member involvement is embedded into planning, service delivery, development, and review.
  • DEBRA’s work demonstrates the diversity of the EB community.
  • DEBRA understands the impact our work has on our members and the EB Community.
  • DEBRA learns from and values member experience and expertise.
  • Longer term member engagement with DEBRA is nurtured.
  • Members feel valued, respected, included, and empowered.


A group or individual who can affect or is affected by the achievement of DEBRA’s objectives.

DEBRA Members:
Individuals who are signed up to the DEBRA membership scheme.

EB Community:
Anyone living with, affected by EB, working with, or has a professional interest in EB, who may or may not be part of the DEBRA membership scheme.

3. Responsibilities

  • The Senior Management team has responsibility for leading the organisation on the EB Community involvement, ensuring that it is embedded in the planning and review of DEBRA’s strategy and services.
  • The Board of trustees has a responsibility to review and monitor DEBRA’s performance in relation to stakeholder involvement regularly.
  • It is the responsibility of all managers and staff to build stakeholder involvement into their work, including planning and review.
  • It is the responsibility of all managers and staff to identify how their work could impact members and the EB Community and when they should be consulted or informed.
  • It is the responsibility of all mangers and staff to consider the needs and any adjustments required to enable members to be involved being mindful of the impact this involvement may have on them and how to access additional support if required.

The following examples demonstrate some initiatives that we are taking to involve our members in our work:

Membership, Healthcare and Community Support Services

DEBRA involves the EB community in identifying needs, priorities, satisfaction, and activities that directly support people living with EB. Engaging with members on new healthcare initiatives such as developing an EB podiatry training course, the location of holiday homes, priorities for grant funding and ways of enabling members to meet and share experiences such as the on-line groups.


As set out in the DEBRA Articles of Association, at least 50% of DEBRA Trustees are people with direct experience of EB.

Research Programme and Clinical Practice Guidelines

DEBRA involves the EB Community in identifying priorities for research funding and for developing clinical practice guidelines.
All Clinical Practice Guidelines (CPG) Panels are required to include at least one EB patient, as well as clinicians covering a range of expertise in each topic.


DEBRA empowers members and the EB community to become actively involved in fundraising for DEBRA by assisting with campaigns, sharing their stories, raising funds should they wish to do so, however it is not an expectation.

The fundraising team consider the needs and any adjustments required to enable members to be actively included.

Marketing and Communication

DEBRA provides a variety of resources to keep the EB community informed, including via the DEBRA website, social media, and publications.

DEBRA values our members’ lived experiences, the benefit they bring to the EB community, and to helping the wider public understand the impact of EB. These stories whether in written words, images or video are actively used across the DEBRA teams and help us understand the needs of the EB community.

The DEBRA EB Media Ambassador Scheme supports and empowers the EB community by telling their stories and helping others better understand the condition.

4. Methods of engagement

A variety of engagement methods are utilised to enable member involvement, individually or as a group. Examples include:

  • Member e-news, information sharing via publications/web site
  • Events and get-togethers; face to face and virtual
  • One to one interviews / individual feedback
  • Surveys
  • Sharing lived experiences
  • Questionnaires and feedback forms
  • Feedback, comments, and suggestions; including via social media, email, or verbally
    ‘Members Voice’ engagement workshops – approximately every 10 weeks all members will be invited to take part in virtual groups to gain insight, ask questions, share ideas and thoughts on strategy and charitable activities. If required and appropriate, additional meetings may take place with a restricted group of members on specific topics for example EBS community on the topic of access to foot care, or teenagers’ involvement in planning a weekend away for their age group. These groups will be facilitated by an experienced engagement leader. The meetings will have a clear agenda, objectives, and feedback summary to share with the wider EB community, management and charitable activities committee.

5. Related documents