EB Community Advisory Board

Medical Disclaimer: Any and all medical information provided by the EB CAB on this website is for general informational purposes only. It is not intended as medical advice or to substitute the care, diagnosis, and guidance of qualified physicians or healthcare professionals. Always consult your personal medical team before starting or changing any treatments or medications. The EB CAB does not endorse or recommend specific drugs, tests, or clinical procedures.

Our Scope & Mission: As patients, parents, and caregivers living with EB ourselves, we deeply understand the daily struggles, fears, and hopes of our community. The EB CAB was established specifically to represent the collective voice and interests of the global EB community in conversations with researchers, pharmaceutical companies, and regulatory authorities to ensure patient needs shape future therapies.

Please note that the EB CAB is not a patient support organisation and cannot offer individual advice, medical support, or direct patient care. If you or a family member are looking for personal guidance, practical help, or local support, we warmly encourage you to reach out directly to your national or regional EB patient organisation, who are dedicated to walking alongside you every step of the way.