Substantial action is needed to support rare disease patients

The EESC’s recent own-initiative report highlights the next steps required to improve the lives of rare disease patients, including actualising legislative framework, optimising policy and harnessing technological innovations

By Alain Coheur

Member of the European Economic and Social Committee

27 Feb 2024

The patient community has been continuously, and understandably, advocating for a patient-centred, all-encompassing European strategy on rare diseases. Listening to, and working with, rare disease patients, relatives and healthcare professionals has been the foundation for the research inspiring the European Economic and Social Committee (EESC) own-initiative opinion, Ensuring strong European solidarity for rare disease patients. This recent support from the EESC should be a new stepping stone in political and health prioritisation during the next term. The EESC and its European civil society members will continue working with patients and representatives to advance their plea. 

Medical innovation, technological advances in care delivery and unlocking the potential of data must be put to use

Proactive and continuous dialogue with patients and the rare disease community are a necessary cornerstone for actualising the legislative framework, optimising the integration of European and Member State policy to speed up access to diagnosis, treatment and care. The promise of progress is here: medical (genetic and genomic) innovation, technological advances in care delivery and unlocking the potential of data must be put to use to provide personalised care based on patients’ needs and priorities establishing a personal patient pathway.  

Overcoming inequalities in (financial) access are a true challenge for the European health union. Allying with the rare disease community during this term, the European Parliament and the EESC are clear in their demand towards the European Commission and the Member States for the next term: we need substantial action, now.  

Read more about Rare Disease Day on our Rare Disease Hub or in our Rare Disease supplement.



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