European policies; European reference networks; National plans; Neonatal screening; Patients organizations
Indexed keywords
ACCESS TO INFORMATION;
ARTICLE;
COMMUNITY CARE;
DISEASE REGISTRY;
DRUG INDUSTRY;
DRUG MARKETING;
EUROPE;
GENETIC SCREENING;
HEALTH CARE ORGANIZATION;
HEALTH CARE POLICY;
HEALTH PROGRAM;
HUMAN;
INFORMATION DISSEMINATION;
INTERNATIONAL CLASSIFICATION OF DISEASES;
MEDICAL INFORMATION;
MEDICAL RESEARCH;
NEWBORN SCREENING;
PREVALENCE;
PRIMARY PREVENTION;
PRIORITY JOURNAL;
PUBLIC HEALTH SERVICE;
RARE DISEASE;
CLASSIFICATION;
DRUG MANUFACTURE;
ECONOMICS;
EUROPEAN UNION;
FEMALE;
HEALTH;
INTERNATIONAL COOPERATION;
LEGAL ASPECT;
MALE;
NEWBORN;
PUBLIC HEALTH;
REGISTER;
REVIEW;
EUROPEAN UNION;
FEMALE;
GENETIC TESTING;
HEALTH POLICY;
HUMANS;
INFANT, NEWBORN;
INTERNATIONAL COOPERATION;
MALE;
NATIONAL HEALTH PROGRAMS;
NEONATAL SCREENING;
ORPHAN DRUG PRODUCTION;
RARE DISEASES;
REGISTRIES;
WORLD HEALTH;
EID: 79952065108PISSN: 00652598EISSN: NoneSource Type: Book Series DOI: 10.1007/978-90-481-9485-8_25Document Type: Article
Commission of the European Communities, Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003)
Commission of the European Communities (1999) Decision No 1295/1999/EC of the European Parliament and of the Council of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003). http://eur-lex.europa.eu/pri/en/ oj/dat/1999/l-155/l-15519990622en00010005.pdf
(1999)
3
79959551671
Commission of the European Communities, Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products
Commission of the European Communities (2000) Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products. http://eur-lex.europa.eu/smartapi/cgi/sga-doc? smartapi!celexapi!prod!CELEXnumdoc&lg=en&numdoc=32000R0141&model= guichett)
(2000)
4
79959542624
Commission of the European Communities
Commission of the European Communities (2007) Web site of the European Commission on the Seventh Framework Programme (2007-2013). http://ec.europa.eu/ research/fp7/
Commission of the European Communities(2008) 679 final 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
Commission of the European Communities (2008) Communication COM (2008) 679 final 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.http://ec.europa.eu/health/ph-threats/non-com/ docs/rare-com-en.pdf
Commission of the European Communities (2008) Proposal for a Directive of the European Parliament and of the Council on the application of patients' rights in cross-border healthcare. http://ec.europa.eu/health/ph-overview/co- operation/healthcare/cross-border-healthcare-en. htm
Commission of the European Communities Council Recommendation of 8 June 2009 on an action in the field of rare diseases
Commission of the European Communities (2009) Council Recommendation of 8 June 2009 on an action in the field of rare diseases. http://eur-lex.europa.eu/ LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF
(2009)
8
79959541100
Commission Decision of 30 November establishing a European, Union Committee of Experts on Rare Diseases (2009/872/EC)
Commission Decision of 30 November 2009 establishing a European Union Committee of Experts on Rare Diseases (2009/872/EC) http://eur-lex.europa.eu/ LexUriServ/LexUriServ.do?uri=OJ:L:2009:315:0018:0021:EN:PDF
(2009)
9
79959564689
Commission of the European Communities
Commission of the European Communities (2010) European Network of References for Rera Diseases. http://ec.europa.eu/health/ph-threats/non-com/ rare-8-en.htm
European Medicines Agency, Annual report of the European Medicines Agency 2008. Adopted by the Management Board on 7 May 2009
European Medicines Agency (2009) Annual report of the European Medicines Agency 2008. Adopted by the Management Board on 7 May 2009. http://www.emea. europa.eu/pdfs/general/direct/emeaar/AnnualReport2008.pdf
(2009)
11
79959535037
EUROPLAN, The European Project for Rare Diseases National Plans Development, A three-year project supported by the European Union.
EUROPLAN. The European Project for Rare Diseases National Plans Development (2010) A three-year project supported by the European Union. http://www.europlanproject.eu/
(2010)
12
79959564274
ENERCA European Network for Rare and Congenital Anomalies, A project supported by the European Union
ENERCA European Network for Rare and Congenital Anomalies (2010) A project supported by the European Union http://www.enerca.org/
(2010)
13
79959553936
E-RARE, ERA-Net for research programs on rare diseases
E-RARE (2010) ERA-Net for research programs on rare diseases. http://www.e-rare.eu/
(2010)
14
79959541544
EUROBIOBANK
EUROBIOBANK (2010) European Network of DNA, cell and tissue bank for rare diseases http://www.eurobiobank.org
EUROCAT (2005) Prevention of neural tube defects by periconceptional folic acid supplementation in Europe. http://www.eurocat-network.eu/content/ Special-Report-NTD-2ndEd-PartI.pdf
EURORDIS (European Organisation for Rare Diseases)
EURORDIS (European Organisation for Rare Diseases) (2010) http://www.eurordis.org
(2010)
19
79959560512
EURORDIS (European Organisation for Rare Diseases)
EURORDIS (European Organisation for Rare Diseases) (2010) The voice of 12 000 patients. http://www.eurordis.org/IMG/pdf/voice-12000-patients/ EURORDISCARE-FULLBOOKr.pdf
EuroWilson. A project supported by the European Union.
EuroWilson (2010) European Clinical Database for Wilson's disease. A project supported by the European Union. http://www.eurowilson.org/en/home/ index.phtml
Ministry of Health of Bulgaria, (Genetic, congenital malformation and nonhereditary diseases)
Ministry of Health of Bulgaria (2009) Bulgarian National Plan for Rare Diseases 2009-2013 (Genetic, congenital malformation and nonhereditary diseases). http://www.raredis.org/pub/events/NPRD.pdf
Ministry of Health of Greece (2008) Greek National Plan on Rare Diseases 2008-2012 http://www.ygeianet.gov.gr/HealthMapUploads/Files/SPANIES-PATHISEIS- TELIKO-LOW.pdf
Ministry of Health of Portugal (2008) Portuguese National Plan on Rare Diseases 2008-2015 http://ec.europa.eu/health/ph-threats/non-com/docs/portugal. pdf
Ministry of Health and Social Affaires of Spain (2009) Rare Diseases Strategy of the Spanish National Health System http://www.msc.es/organizacion/ sns/planCalidadSNS/docs/enfermedadesRaras.pdf
Ministry of Health and Social Protection of France, Ensuring equity in the access to diagnosis, treatment and provision of care
Ministry of Health and Social Protection of France (2004) French National Plan for Rare Diseases 2005-2008 "Ensuring equity in the access to diagnosis, treatment and provision of care". http://www.orpha.net/actor/ EuropaNews/2006/doc/French-National-Plan.pdf
Orphanet (2010) Prevalence of rare diseases: A bibliographic survey November 2009 http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence-of-rare- diseases-by-alphabetical-list.pdf
Rare Diseases Task Force, A technical and scientific report from an expert group of the European Union Rare Diseases Task Force
Rare Diseases Task Force (2006) Centres of Reference for rare diseases in Europe: Stateof-the-art in 2006 and recommendations of the Rare Diseases Task Force. A technical and scientific report from an expert group of the European Union Rare Diseases Task Force.http://ec.europa.eu/health/ph-threats/non-com/ docs/contribution-policy.pdf
