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Parliamentary questions
9 February 2018
Question for written answer
to the Commission
Rule 130
Merja Kyllönen (GUE/NGL)

 Subject:  Rare diseases

Rare diseases are life-threatening or chronically debilitating, mostly inherited diseases, with a very low incidence. In EU countries, any disease that affects fewer than 5 in 10 000 people is considered to be rare. Therefore, combined efforts are needed to address them so as to prevent illness, deaths among newborn babies and young children, and substantial impairment of the quality of life or socioeconomic opportunities of sufferers.

A high level of protection of human health is supposed to be ensured in formulating and implementing all Community policies and activities. European Union action, which serves to complement national policies, is intended to improve public health, prevent human diseases and disorders, and eliminate dangers to human health. However, the rarity of diseases presents challenges when it comes to identifying and treating them, rehabilitating patients and providing services, as well as in sufferers’ daily life.

Has the Commission increased the incentives to improve medical devices and diagnostics for rare diseases?

What has been done at EU level to improve the uniform availability of medicinal products for rare diseases and with regard to price setting and determination of reimbursements?

Original language of question: FI 
Last updated: 22 February 2018Legal notice