TY - STD TI - European Union Committee of Experts on Rare Diseases website. [http://www.eucerd.eu]. UR - http://www.eucerd.eu ID - ref1 ER - TY - STD TI - Commission Decision establishing a European Union Committee of Experts on Rare Diseases (2009/872/EC), 30 November 2009. [http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2009:315:0018:0021:EN:PDF]. UR - http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2009:315:0018:0021:EN:PDF ID - ref2 ER - TY - STD TI - Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare diseases: Europe's challenges COM (2008) 679 final. 2008 [http://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf]. UR - http://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf ID - ref3 ER - TY - STD TI - Council Recommendation on an action in the field of rare diseases (2009/C 151/02). 2009, [http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF]. UR - http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF ID - ref4 ER - TY - STD TI - OrphaNews Europe. [http://www.orphanews.org]. UR - http://www.orphanews.org ID - ref5 ER - TY - STD TI - Report from the High Level Group to the Employment, Social Affairs, Health and Consumer, Protection Council on 6–7 December 2004 (HLG/2004/21). 2004 [http://ec.europa.eu/health/ph_overview/co_operation/healthcare/docs/highlevel_2004_026_en.pdf]. UR - http://ec.europa.eu/health/ph_overview/co_operation/healthcare/docs/highlevel_2004_026_en.pdf ID - ref6 ER - TY - BOOK PY - 2011 DA - 2011// TI - Recommendations on quality criteria for centres of expertise for rare diseases in Member States ID - ref7 ER - TY - STD TI - Directive 2011/24/EU of the European Parliament and of the Council on the application of patients’ rights in cross-border healthcare. 2011 [http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:EN:PDF]. UR - http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:088:0045:0065:EN:PDF ID - ref8 ER - TY - BOOK PY - 2006 DA - 2006// TI - Centres of reference for rare diseases in Europe: State-of-the-art in 2006 and recommendations of the Rare Diseases Task Force ID - ref9 ER - TY - BOOK PY - 2013 DA - 2013// TI - European Union Committee of Experts on Rare Diseases: Recommendations on European Reference Networks for rare diseases ID - ref10 ER - TY - BOOK PY - 2013 DA - 2013// TI - Call H2020-HCO-2015 ID - ref11 ER - TY - STD TI - Orphanet. [http://www.orpha.net]. UR - http://www.orpha.net ID - ref12 ER - TY - BOOK PY - 2013 DA - 2013// TI - Recommendations on rare disease patient registration and data collection ID - ref13 ER - TY - STD TI - International Rare Diseases Research Consortium. [http://www.irdirc.org]. UR - http://www.irdirc.org ID - ref14 ER - TY - STD TI - European Union Regulation on orphan medicinal products (regulation (EC) No 141/2000). [http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:018:0001:0005:en:PDF]. UR - http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:018:0001:0005:en:PDF ID - ref15 ER - TY - BOOK PY - 2012 DA - 2012// TI - Recommendation on improving informed decisions based on the clinical added value of orphan medicinal products information flow ID - ref16 ER - TY - BOOK PY - 2013 DA - 2013// TI - Recommendations on core indicators for rare disease national plans/strategies ID - ref17 ER - TY - BOOK AU - Vittozzi, L. AU - Burgard, P. AU - Cornel, M. AU - Hoffmann, G. F. AU - Lindner, M. AU - Loeber, G. J. AU - Rigter, T. AU - Rupp, K. AU - Taruscio, D. AU - Weinreich, S. PY - 2012 DA - 2012// TI - Executive report to the European commission on newborn screening in the European Union ID - Vittozzi2012 ER - TY - BOOK PY - 2013 DA - 2013// TI - European Union Committee of Experts on Rare Diseases: Opinion of the EUCERD on potential areas for European collaboration in the field of New Born screening ID - ref19 ER - TY - STD TI - European Union Committee of Experts on Rare Diseases: Report on the state of the Art of rare disease activities in Europe. Edited by: Aymé S, Rodwell C. July 2010. July 2011, July 2012, July 2013, [http://www.eucerd.eu/?page_id=163#StateArt]. UR - http://www.eucerd.eu/?page_id=163#StateArt ID - ref20 ER - TY - STD TI - EUnetHTA. [http://www.eunethta.eu/]. UR - http://www.eunethta.eu/ ID - ref21 ER - TY - STD TI - European partnership action against cancer. [http://www.epaac.eu/]. UR - http://www.epaac.eu/ ID - ref22 ER - TY - STD TI - PARENT Joint Action. [http://www.patientregistries.eu/Stranky/Home.aspx]. UR - http://www.patientregistries.eu/Stranky/Home.aspx ID - ref23 ER -