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Parliamentary questions
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9 February 2018
E-000830-18
Question for written answer E-000830-18
to the Council
Rule 130
Merja Kyllönen (GUE/NGL)

 Subject:  Rare diseases
 Answer in writing 

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 need to be brought to bear in order to prevent morbidity, neonatal mortality and deaths of young children, and substantial impairment of the quality of life or socioeconomic possibilities for sufferers.

Although decisions concerning the pricing of medicines and the reimbursements payable lie solely within the national sphere of responsibility, Member States all face the major challenge of offering sufferers affordable medicines and making those medicines readily available. Meeting that challenge becomes an unusually difficult problem when the number of patients involved is small and the necessary treatments and medicines are hard to come by and expensive, as is often the case with rare diseases and orphan drugs.

What steps have been taken in the Council to enable Europeans to obtain a high standard of care for rare diseases at an affordable price?

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