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 across the entire therapy development chain, from basic research through clinical trials to approval, access, and pricing.
Unlike advisory panels assembled by individual companies, a CAB's members are chosen by the community, not by industry. The same board advises multiple sponsors in its disease area over time, with agendas co-developed by the community and the sponsor. This protects independence and keeps the patient voice consistent across the research landscape.
The EB CAB is built on the GlobalCAB programme framework, an established international model used by patient communities worldwide.
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 all industry sponsors. Our advice reflects solely the perspective of the EB community.
Executive Founding Committee
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Rainer Riedl
Father of a daughter living with EB, CEO of DEBRA Austria, and founder of the EB House and EB Research Institute, with decades of leadership in EB research and patient care.
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Melanie Isele
Mother of a child living with EB, patient expert, and strategic advisor for rare diseases. She chairs the EB-CAB for German-speaking Europe and is active in European advocacy networks including EURORDIS and ERN SKIN.
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Elizabeth Hoffman
Mother of two children living with EB, and a patient advocate active in the American EB community, including EB Research Partnership and DEBRA of America. She has a marketing and strategy background, and speaks and writes about EB.
Our Principles
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We provide objective, balanced advice. The EB CAB operates independently — of patient organisations, research foundations, and industry — and answers only to the EB community.
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All collaborations are conducted openly and to applicable ethical and compliance standards.
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We value constructive dialogue and the expertise every stakeholder brings.
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Patient involvement should occur early, regularly, and throughout the development process.
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We strive to represent all forms of EB, all regions, and all age groups.