Fondazione Gianni Benzi took part, from 4 to 7 November 2025, in the EP PerMed Implementation School on Personalised Medicine – Data-driven Research and Implementation, held in Zaragoza at the CIBA – Aragon Health Sciences Institute. The School, organised by the EP PerMed partners with the support of DLR Projektträger, aimed to strengthen the skills […]

Fondazione Gianni Benzi joined in the 2nd ERDERA General Assembly 2025, held this year in Amsterdam and bringing together the European community committed to rare disease research. It was an important moment not only to review the outputs of the first year of the project, but also to contribute to the discussions that will shape […]

Fondazione Gianni Benzi took part in the World Orphan Drug Congress 2025, which once again gathered institutions, industry, researchers, regulators and patient organisations to address key challenges in the field of rare diseases. Viviana Giannuzzi, Head of the Research and Innovation Department, contributed to the programme with several interventions focused on regulatory aspects and research […]

Fondazione Gianni Benzi took part in the 20th edition of the Annual Sickle Cell & Thalassaemia Conference (ASCAT), which took place in London from 1 to 4 October 2025. This major international event, organised in collaboration with the European Hematology Association and the British Society of Haematology, is a key platform for global scientific exchange […]

As part of the FAIR Training School 2025 – Advancing FAIR data practices for rare disease research, organised by ERDERA and hosted by the World Duchenne Organization, our researcher, Annalisa Landi, held a session on “Data Protection, Ethics and Regulatory Aspects”. She focused her contribution on the key aspects of personal data protection, ethics, and […]

Fondazione Gianni Benzi participated in the COST Connect – Gender Equality Plans in COST Actions event, held in Brussels on 13 May 2025. The initiative, organised by COST (European Cooperation in Science and Technology), represented an important opportunity for dialogue among COST Actions members committed to promoting gender equality in research and innovation. The Foundation […]

On 12-15 May 2025, Fondazione Gianni Benzi participated in the FAIR Principles Training School organised by HemaFAIR in collaboration with the HELIOS Network in Larnaca, Cyprus.   Participants had the opportunity to explore how research data can be made Findable, Accessible, Interoperable, and Reusable (FAIR), not only in theory but also in practice, through in-depth lectures, […]

On 2–3 May 2025, Dr Silvia Torretta from Fondazione Gianni Benzi participated as a speaker in the Training Event on Paediatric Clinical Research for Young People Living with a Rare Disease, organised by the TEDDY Network within the framework of the ERDERA Project. The training was aimed at raising awareness among young patient advocates about […]

Fondazione Gianni Benzi recently participated the Final Project Meeting of the conect4children (c4c) initiative in Venice, Italy. The event took place on 1–2 April 2025 at Scuola Grande San Giovanni Evangelista, a historical venue. Importantly, this meeting marked the conclusion of the c4c project, active in paediatric clinical trials across Europe. Over two days, the […]

On 31 March and 1 April, the ERAMET consortium was involved in a face-to-face meeting hosted by Warwick University (Coventry, UK). After one year from the project kick-off, a year full of collaboration and hard work to set up all project activities, consortium partners gathered to reflect on the first-year achievements and strategies for the upcoming months. Dr Silvia Torretta represented our […]