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.
In this opinion, the EESC is calling on the Commission to launch a comprehensive European Action Plan on Rare Diseases (APRD) with SMART targets that can be achieved by 2030 to enable the diagnosis of rare disease patients within one year. Such plan should be accompanied by the allocation of appropriate budgetary resources and identify common and measurable goals to help define and implement national plans and strategies for RD, encourage Member States and continue cooperation at EU level.
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 — EGSZB-vélemény: Ensuring strong European solidarity for rare disease patients
