Latest News
Updates from projects
News and updates on the activities, initiatives and projects involving the Fondazione Gianni Benzi Onlus.
Fondazione Gianni Benzi at the ERDERA General Assembly 2025
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...
Fondazione Benzi at the World Orphan Drug Congress Europe 2025
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...
FGB participation in the FAIR Training School 2025
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”....
Promoting gender equality in research: FGB at COST Connect
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...
FAIR Principles Training School
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,...
ERDERA training for young advocates for rare diseases
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...
FGB at c4c Final Project Meeting: advancing paediatric research
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...
ERAMET’s first year milestone meeting
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...
Annalisa Landi’s lecture on ELSI anda data protection for rare diseases data
We are pleased to announce that our researcher, Mrs. Annalisa Landi, recently give a talk entitled "ELSI and Data Protection for Rare Diseases Data". This insightful presentation was part of the HemaFAIR project, which aims to promote the application of FAIR...
ERDERA launches 2025 call for rare disease research proposals
The European Rare Diseases Research Alliance (ERDERA) has officially launched the 2025 Joint Transnational Call for Proposals focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”. This...