About Us

What Is A Community Advisory Board?

A Community Advisory Board (CAB) is an independent group of patients, family members, and caregivers who use their lived experience to advise sponsors of clinical research — public or private. CABs advise on trial protocols and informed consent, patient-relevant endpoints and outcome measures, development pipelines, compassionate use programmes, and access, reimbursement, and pricing.

What makes a CAB different from a company advisory panel: members are chosen by the community, not by industry; the same board advises multiple sponsors in its disease area over time; and the agenda is co-driven by the community and the sponsor. This protects independence and keeps the patient voice consistent across the whole research landscape.

The EB-CAB follows the GlobalCAB programme framework. Learn more at globalcab.org.

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We We Are + Independence

Who We Are

The EB Community Advisory Board is an independent, patient-led body representing the global epidermolysis bullosa community. Our members include people living with EB, parents and caregivers, and patient advocates from diverse geographical and cultural backgrounds. By bringing together lived experience and collective expertise, we provide a perspective that complements scientific, clinical, and regulatory knowledge.

Our Independence

The EB-CAB operates independently from DEBRA, the EB Research Partnership (EBRP), and all industry sponsors. Our advice reflects solely the perspective of the EB community.

Vision

A world where people living with DM1 have access to effective, affordable treatments — and where the patient community is a respected, equal partner in every stage of research, development and care.

Mission

Our mission is to influence DM1 research and development so treatments truly meet patient and carer needs, to expand access and reimbursement worldwide, to raise awareness and understanding of DM1, and to build a louder voice for our community by recruiting and training patient advocates across the globe.

What We Do

We act as an independent consulting service to everyone involved in researching, developing and providing DM1 treatments - reviewing study designs, monitoring research against patient priorities, and representing the patient voice at key meetings. We advocate for fair pricing, universal access, and a research agenda shaped by what patients actually need..

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Our Principles

  • We provide objective, balanced advice; we operate independently from DEBRA, EBRP, and industry.

  • All collaborations are conducted openly and to applicable ethical and compliance standards.

  • We value constructive dialogue and the expertise every stakeholder brings.

  • Patient involvement should occur early, regularly, and throughout the development process.

  • We strive to represent all forms of EB, all regions, and all age groups.