On 28 and 29 October 2024, Fondazione Gianni Benzi’s President Fedele Bonifazi and Viviana Giannuzzi, Head of Research and Innovation Department, participated in the kick-off meeting of the ERDERA project. This event marked the beginning of a new era in rare disease research, with over 600 people attending either online or in person in Paris.
In the public session, renowned experts shared insights on the critical role of ERDERA in structuring the ecosystem to benefit patients, the challenges and achievements of the rare diseases research, the importance of capacity building and sustainable networks, the EU’s commitment to rare disease research, the potential of industry partnerships, and the patient-driven approach embedded in ERDERA.
In the following sessions dedicated to ERDERA partners, a series of thematic and parallel sessions grouped researchers engaged in the project. Fondazione Benzi had particularly contributed to the Expertise WorkStream comprising mentoring, consultancy, regulatory and methodological support, as a co-leader of the WorkStream and of two work packages (Mentoring&Consultancy, Regulatory Support Service). This was the occasion to share and discussion on the interconnections with the other WorkStreams strictly linked with the Expertise one.
ERDERA aims to foster collaboration, support research, and accelerate solutions for rare diseases. By uniting researchers, clinicians, industry partners, and patients, ERDERA strives to improve the lives of millions affected by these conditions.