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#	Item
191	Landscape of Disease Registries in Europe and Challenges at Country level Ségolène Aymé INSERM, Paris, France Add to Reading List Source URL: ehealth2014.org Language: English - Date: 2014-06-24 07:44:33 Disease registry Evidence-based medicine Orphanet Rare disease Medicine Health Medical informatics
192	Orphanet activities seeking support The Orphanet website The Orphanet website is accessed by 350,000 users per month originating from over 210 countries. One third of users are patients and their relatives, and two-third Add to Reading List Source URL: www.orpha.net Language: English - Date: 2012-12-10 05:15:01 Drug discovery Orphanet Medicine Rare disease Clinical trial Orphan drug Health Epidemiology Science
193	Human Phenome Ontology Orphanet Rare Diseases Ontology: International standards to describe patients Ana Rath, Peter Robinson, Ségolène Aymé [removed] Add to Reading List Source URL: ehealth2014.org Language: English - Date: 2014-06-24 07:46:30 Health Genetics Orphanet Phenotype Penetrance Science Biology Rare diseases Biological databases
194	6th European Conference on Rare Diseases & Orphan Products A better future for Patients: Shaping together the Agenda 2020 Executive Summary A conference organised by Add to Reading List Source URL: download.eurordis.org Language: English - Date: 2012-11-06 10:17:09 Rare disease European Organization for Rare Diseases Medicine Orphan drug European Medicines Agency Orphanet EuropaBio European Union Rare Disease Day Science Health Epidemiology
195	NO CODE – NO NAME – NO EXISTENCE Add to Reading List Source URL: ec.europa.eu Language: English - Date: 2013-10-09 08:47:43 European Organization for Rare Diseases Rare disease National Institutes of Health EuroBioBank Orphanet Orphan drug Neglected diseases Rare Disease Day Health Medicine Science
196	Microsoft Word - updated inventory august 2002.doc Add to Reading List Source URL: ec.europa.eu Language: English - Date: 2013-10-09 09:11:39 Science Drug discovery Orphan drug Clinical research Rare disease Orphan Drug Act European Organization for Rare Diseases Orphanet Pharmaceutical industry Pharmaceuticals policy Pharmaceutical sciences Health
197	Microsoft PowerPoint - S.AYME - Orphanet.ppt Add to Reading List Source URL: ec.europa.eu Language: English - Date: 2011-10-28 11:09:56 Directorate-General for Health and Consumers Science Syndromes Rare diseases Orphanet Health
198	Microsoft PowerPoint - K.PARKINSON - EUROWABB.pptx Add to Reading List Source URL: ec.europa.eu Language: English - Date: 2011-10-28 11:09:58 Science Bardet–Biedl syndrome Rare disease Clinical trial Orphanet Alström syndrome Health Ciliopathy Epidemiology
199	Marche des Maladies Rares – Alliance Maladies Rares Orphanet Report Series Rare Diseases collection December Add to Reading List Source URL: www.orpha.net Language: English - Date: 2013-10-21 08:05:01 Genetic genealogy Rare diseases 17q21.31 microdeletion syndrome 3q29 microdeletion syndrome Alström syndrome Down syndrome Turner syndrome Myelodysplastic syndrome Chromosome 1 Health Syndromes Genetics
200	2013 REPORT ON THE STATE OF THE ART OF RARE DISEASE ACTIVITIES IN EUROPE PART III: EUROPEAN COMMISSION ACTIVITIES IN THE FIELD OF RARE DISEASES Add to Reading List Source URL: www.eucerd.eu Language: English - Date: 2013-07-09 10:02:34 European Organization for Rare Diseases Rare disease European Medicines Agency Orphan drug Rare Disease Day Orphanet Directorate-General for Health and Consumers Public health Health Health economics Science

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