EPIRARE: survey on rare disease patient registries
EPIRARE: European Platform for Rare Disease Registries (project funded by the European Commission).
The main goal of the project is to carry out a feasibility study addressing regulatory, ethical and technical issues associated with the possible creation of a European reference platform for rare disease patient registers.
EURORDIS (European Organisation for Rare Diseases) is a full partner in this project and is carrying out this survey in order to gather the opinions and expectations of patients regarding this issue.
As the impact of the study will be directly related to the number of responses collected, your contribution is of paramount importance!
Thank you very much for your collaboration that should take not more than 15-20 minutes.