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Parliamentary questions
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16 January 2020
Answer given by Ms Kyriakides
on behalf of the European Commission
Question reference: E-003285/2019

An orientation paper(1) on Horizon Europe, the next research and innovation framework programme, was released in June 2019 and is subject to public consultation(2). The document aimed to stimulate a co-design process by setting the foundations to prepare the first four years of the Horizon Europe Strategic Plan (2021-2024). The document refers to research on rare diseases, and a future rare diseases partnership building on the lessons learnt from the European Joint Programme on Rare Diseases(3), and to implement the objectives of International Rare Diseases Research Consortium(4).

The ongoing evaluation of the EU Orphan and Paediatric Regulations(5) includes an assessment of market incentives and national measures to increase accessibility to medicines. On the basis of this evaluation, the new Commission will decide on the next steps.

In line with the Treaty(6), EU action in the field of public health must fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care. This includes neonatal screening programmes. The Commission can facilitate the exchange of best practices between Member States.

In 2013, the EU Committee of Experts on Rare Diseases issued an opinion on potential areas of collaboration on newborn screening(7). Since then, Member States have not opted to explore collaboration of harmonisation of their newborn screening efforts.

The Commission’s Steering Group(8) facilitates learning between Member States. The Group has addressed the issue of rare diseases in the past two years, focusing on codification and registration. The European Reference Networks also allow healthcare providers in the EU to work together virtually to diagnose and treat patients with rare diseases.

(6)Treaty on the Functioning of the European Union: http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:12012E/TXT&from=EN
(8)Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases https://ec.europa.eu/health/non_communicable_diseases/steeringgroup_promotionprevention_en
Last updated: 16 January 2020Legal notice