EB Priority Setting Partnership

Cure EB was happy to partner with Debra UK, Debra International, EB Research Partnership, Debra Canada, Debra Ireland, the James Lind Alliance and Synergy Healthcare Research to find the EB community’s unanswered questions about EB.

Using the JLA research method, research questions were sent to EB patients, family members, carers and friends, as well as healthcare professionals around the world and priorities identified through a combination of online surveys and small group workshops.

The number one priority was to find a cure for all types of EB. But, in the short term, treatment priorities were identified for each type of EB.

For more details on the project methodology and the priorities identified, read the report here:

Cure EB remains a fully research-focused charity – 100% of donations go to fund research to find effective treatments and a cure for all types of EB. Take a look at our current projects to find out more.