13. Who will see my answers?

Members of Synergy Healthcare Research will see your answers as they will be conducting interviews and analysing the results of the online survey.

Synergy will not share this data with any other organisations or individuals, other than sharing the anonymised results with DEBRA.  The pharmaceutical companies funding the majority of this study will only see whatever reports DEBRA publish based on the anonymised information from Synergy. DEBRA will share the anonymised reports and key insights with people and organisations that we think can help us deliver our goals for the EB community, for example we will share the anonymised report to support our lobbying plans and to help secure additional funding to find treatments and cures.