MEDIA

EVENTS

The annual General Assembly and Consortium Meeting of the European Joint Programme on Rare Diseases – EJP RD was held in September 2022 in Porto, Portugal.

It was the occasion to share the achievements reached so far within the programme and to plan and discuss, among all the members across Europe, the next steps to enhance the cooperation and innovation for research in rare diseases.

Fondazione Gianni Benzi is actively committed in the EJP RD activities, particularly in the ethics and regulatory field and also played a crucial role in the development of an Informed Consent Form template for the European Reference Networks (ERN) registries, translated in 26 languages.

During the Meeting, Annalisa Landi, researcher at Fondazione Benzi and strongly involved in the EJP RD tasks, shared her thoughts on how EJP RD is changing the rare diseases landscape.

Watch the brief interview to Annalisa here!

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