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Parliamentary questions
17 December 2015
E-013819/2015
Answer given by Mr Andriukaitis on behalf of the Commission

While the Commission has no specific policy in place to address progeria, patients with progeria can benefit from actions developed under policy action on rare diseases in general.

To raise awareness and to provide information on rare diseases, the Commission has supported for several years the Orphanet(1) database, the world reference database on rare diseases for health professionals and patients, describing ca. 6 000 rare diseases including progeria. The Orphanet project has also developed Orphacodes and in collaboration with WHO is contributing to the revision of the current version of the International Classification of Diseases (ICD).

For more information regarding rare diseases work, the Commission would refer to its Implementation report on the Commission Communication on Rare Diseases and Council Recommendation of 2009(2), as well as its answers to Written Questions E-002824/2014(3), E-001863/2015(4) and E-002480/2014(5)on the same subject.

The Commission has been in the lead to establish the International Rare Diseases Research Consortium, IRDiRC(6) that aims to better coordinate, and increase at European and international level, research funding for developing diagnostics and new therapies for rare diseases. Through FP7 the Commission invested more than EUR 500 million in rare diseases research(7) and high levels of funding continue through Horizon 2020. In addition several member states research funding bodies come together to jointly fund rare disease research through the E-Rare3 project(8).

(1)http://www.orpha.net/consor/cgi-bin/index.php
(2)http://ec.europa.eu/ /rare_diseases/docs/2014_rarediseases_implementationreport_en.pdf
(3)http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2014-002824&language=EN
(4)http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2015-001863&language=EN
(5)http://www.europarl.europa.eu/sides/getAllAnswers.do?reference=E-2014-002480&language=EN
(6)http://www.irdirc.org/
(7)https://ec.europa.eu/research/health/pdf/rare-diseases-how-europe-meeting-challenges_en.pdf
(8)http://www.erare.eu/

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