Become a Partner

Partnering with the Global EB Community

The EB Community Advisory Board (EB-CAB) believes that meaningful patient engagement is essential to the successful development of new therapies and improved standards of care for people living with EB.

We work collaboratively with pharmaceutical and biotechnology companies to ensure that the perspectives, experiences, and priorities of the EB community are integrated throughout the entire product development lifecycle — from early research to post-approval activities.

By engaging with the EB-CAB, companies gain access to valuable patient insights that can help make research more relevant, clinical trials more feasible, and therapeutic innovations more responsive to the real needs of people affected by EB. The EB-CAB follows the GlobalCAB programme framework — learn more at globalcab.org.

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Why Partner with EB-CAB?

People living with EB and their families possess unique expertise that cannot be captured through scientific data alone. Their lived experience provides essential insight into the daily burden of the disease, treatment expectations, and unmet needs. Working with the EB-CAB can help companies:

  • Understand the lived experience of EB and identify unmet needs and patient priorities

  • Improve the design and feasibility of clinical studies

  • Develop meaningful, patient-relevant endpoints

  • Strengthen recruitment and retention strategies

  • Enhance patient communication materials and informed consent documents

  • Build trust and long-term relationships with the EB community

Contact Us

Areas of Collaboration

  • Patient priorities and unmet needs · meaningful treatment goals · areas of greatest impact for the EB community

  • Study design and protocol review · endpoints and outcome measures · burden and feasibility · recruitment and retention

  • Review of patient-facing materials · educational resources · accessibility, cultural and geographical considerations

  • Patient preference studies · real-world evidence · access and reimbursement · long-term treatment experience and quality of life

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Every collaboration is tailored to the project and may include advisory meetings and workshops, protocol review sessions, strategic consultations, patient insight sessions, review of educational and communication materials, and long-term partnership programmes.

Our objective is a constructive environment in which patient experience and scientific expertise work together to accelerate progress for the entire EB community.

How We Work

A Shared Commitment

The development of transformative therapies for EB requires partnership, trust, and a genuine commitment to patient engagement. The EB-CAB welcomes opportunities to collaborate with partners who share our vision of placing people living with EB at the centre of research, development, and healthcare innovation.

If you would like to discuss a potential collaboration, we would be pleased to hear from you. Please contact us.