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No previous skills or knowledge. It is meant for anyone who wants to make a difference in his or her rare disease. The first version of the Toolkit was written of the patient advocacy expert partners of the Share4Rare consortium in 2019.
This toolkit aims to help people to get started in patient advocacy, to serve as a repository to go back to and has the ambition to provide new material even for experienced advocates.
This is a useful tool for patients and carers with needs connected to rare diseases. Steps: Read it / Use it or share it
Browse through the most frequent issues and questions.