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Parliamentary questions
6 April 2018
E-000763/2018
Answer given by Mr Moedas on behalf of the Commission

For more than two decades, the EU has, through its Framework Programmes for Research and Innovation, made substantial investments in research and innovation projects on rare diseases. Altogether more than EUR 1 billion has been committed to more than 200 projects related to rare diseases(1) in FP7(2) and Horizon 2020(3). The report ‘Rare Diseases — A major unmet medical need’ explains how EU-funded projects contribute to policies in the field(4). The Commission is currently assessing options for the proposals of the next Multi-annual Financial Framework.

As regards other activities, the regulation on orphan medicinal products(5) provides incentives for research and development and for placing on the market of medicines for rare diseases. European Reference Networks (ERN)(6) established under the directive on patients’ rights in cross-border healthcare(7) link healthcare providers across Europe to facilitate rare disease patients' access to diagnosis and to the best advice and treatment available for specific conditions. 24 ERNs receive funding for their coordination costs under the third Health Programme (HP) and their number is expected to increase until 2020. Rare diseases are also addressed under the Steering Group Health Promotion, Disease Prevention and Management of Non Communicable Diseases(8) to maximise joint efforts with EU Member States focusing on non-communicable diseases. Until now, EUR 47 million has been invested in rare diseases from the second HP and another EUR 32 million minimum from the third HP is earmarked till now. The Commission is also preparing its proposal for future (post-2020) EU action in health.

(1)Information on rare diseases projects is available from the Cordis website: https://cordis.europa.eu/home_en.html
(2)The Seventh Framework Programme for Research, Technological Development and Demonstration Activities (FP7, 2007-2013).
(3)The EU Framework Programme for Research and Innovation (2014-2020).
(4)https://ec.europa.eu/info/sites/info/files/rarediseases_p4p-report_2017.pdf
(5)EC No 141/2000, OJ L 18, 22/1/2000.
(6)https://ec.europa.eu/health/ern_en
(7)2011/24/EU, OJ L 88 4/4/2011.
(8)https://ec.europa.eu/health/non_communicable_diseases/steeringgroup_promotionprevention_en

Last updated: 6 April 2018Legal notice