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 (Findable, Accessible, Interoperable, Reusable) data principles in rare haematological disease research.
The session focused on the ethical, legal, and social issues (ELSI) of data management in the context of rare disease research, emphasising the importance of implementing robust data protection measures.
Annalisa’s presentation provided a comprehensive overview of the challenges and best practices in managing sensitive data coming from rare diseases patients. Her expertise shed light on navigating complex regulatory landscapes to ensure patient privacy and data security while facilitating scientific research.
This lecture reflects the Benzi Foundation’s commitment to advancing knowledge and promoting ethical standards in rare disease research.
The full recording of the webinar is available on the HemaFAIR YouTube channel: watch here.