Answer given by Mr Andriukaitis on behalf of the European Commission
21.6.2019
Phenylketonuria (PKU) is a rare disease. The Commission's strategic objective in this area is to support the Member States in improving patient access to diagnosis, information and care. This is reflected in the priority areas for funding in third Health Programme[1].
Pursuant to Article 168 (7) of the Treaty on the Functioning of the European Union[2], 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, including new born screening. The Commission can facilitate the exchange of best practices and help coordinate Member States' efforts — as it has done before in relation to cancer screening.
However, following the EU Committee of Experts on Rare Diseases 2013 Opinion on Potential Areas of European Collaboration on New Born Screening[3], Member States refrained from further exploration of collaboration or harmonisation in relation to new born screening.
The Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases[4] is a key mechanism for dialogue and priority setting with national health ministries. It has on several occasions discussed the issue of rare diseases in the past two years. Asked to identify priorities for cross-national learning and upscaling of best practice, the Steering Group opted to focus on (rare diseases) coding and registration. This is now followed up and supported via Commission co-funding of the ‘RD-CODE’ project[5].
- [1] https://ec.europa.eu/health/funding/programme_en
- [2] http://eur-lex.europa.eu/legal-content/EN/TXT/HTML/?uri=CELEX:12012E/TXT&from=EN
- [3] http://www.eucerd.eu/wp-content/uploads/2013/07/EUCERD_NBS_Opinion_Adopted.pdf
- [4] https://ec.europa.eu/health/non_communicable_diseases/steeringgroup_promotionprevention_en
- [5] http://www.rd-code.eu/