This exploratory opinion, requested by the Danish Presidency, outlines how AI and Big Data can improve rare disease patient pathways and support the development of personalised treatments. It highlights the main challenges linked to their use, such as data privacy, algorithmic bias, affordability, and geographical accessibility. In the text, the EESC puts forward recommendations to ensure that these technologies are applied in an ethical, inclusive, and patient-centred way.
Rare diseases are often chronic and sometimes disabling diseases affecting an estimated 25/30 million European citizens. Even more people are affected as care taker or family. Patients and relatives face difficulties in access to diagnosis, treatment or care and in their inclusion to society and labour market. In this opinion, the EESC presents its recommendations on how to improve social protection for these patients and raise awareness on their situation and needs.
Download — Stellungnahme des Ausschusses: Ensuring strong European solidarity for rare disease patients
