Become A Member
Join Us
We are looking for people with lived experience of EB to help shape the future of research and treatment.
The role
CAB members attend board meetings (in person if they are able and online), review clinical study designs and consent materials, advocate for global access to treatment, and maintain strict confidentiality. Training and support are provided.
Members are paid for their time in formal CAB meetings, and reasonable travel and accommodation costs are reimbursed.
Apply Today
You should have direct experience of EB — as a person living with EB, a parent, caregiver, or family member. You'll also need:
Good English (reading, writing, and conversation)
An interest in, or willingness to learn about, science and medicine - training is provided
On average up to eight hours per month, plus willingness to travel to meetings
A reliable internet connection for e-meetings
Interested? Complete the form to the right. Your expression of interest will be reviewed by the executive founding committee, and we’ll follow up to discuss next steps, including the CAB’s confidentiality and declaration-of-interest requirements.