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Parliamentary questions
6 April 2018
E-000571/2018
Answer given by Mr Moedas on behalf of the Commission

The Commission has been committed to supporting scientific research on rare diseases for more than two decades. Major investments (over EUR 1 billion) have been made in FP7(1) and Horizon 2020(2) to more than 200 collaborative rare disease-related projects. The Commission awards project grants to consortia through a competitive, peer-reviewed process. Whilst many rare diseases projects are addressing neurological diseases, research specifically focused on Leigh syndrome has not been funded.

The Commission has continuously provided special incentives to advance the development of orphan medicinal products. It considers that each of the estimated 6 000 to 8 000 rare diseases deserve more attention in terms of awareness raising and research activities. It actively contributes to the International Rare Disease Research Consortium (IRDiRC)(3), a joint-funding initiative bringing together funding bodies and organisations committed to investing in rare diseases research, and focusing on diagnostics and therapies for rare diseases. To ensure patients' access to the best diagnosis and treatment available, 24 thematic European Reference Networks have been established in 2017, connecting healthcare providers across the EU.

The EU will maintain its commitment to rare disease research. Around EUR 50 million will be dedicated to a Rare Disease European Joint Programme. This and the Commission-supported E-RARE3 programme(4) bring together national research programmes in funding rare diseases research. These programmes as well as more general call topics in Horizon 2020 may offer funding opportunities for research addressing Leigh syndrome.

(1)The Seventh Framework Programme for Research, Technological Development and Demonstration Activities (FP7, 2007-2013).
(2)The EU Framework Programme for Research and Innovation (2014-2020).
(3)http://www.irdirc.org/
(4)https://www.era-learn.eu/network-information/networks/e-rare-3

Last updated: 6 April 2018Legal notice