Policies / EURORDIS / CORD / Berlin / Madrid / ORPHANET-INSERM / Shire / Herzegovina / Médecine Interne / Cochin / INSERM / Children / Support / Alström Syndrome / Human Genetics / /
Company
Novartis Pharma / Sanofi Company / AKU Society / Eastern European Healthcare Systems / Vice-Chair COMP / Alexion Pharmaceuticals / Agency for Medicinal / Genzyme / Topic Advisory Group / Swedish Orphan Biovitrum AB / Celgene / Haffner Associates / Next Generation Sequencing Diagnostics / European Reference Networks / PRE-COMPETITIVE TOOLS AND RESOURCES / Building European Reference Networks / Bruno Sepodes Chair COMP / Orphanet Journal / Rare Diseases Europe / PUBLIC-PRIVATE PARTNERSHIP / Molecular Genetic Diagnostics / DIA Europe / UK Patients / Actelion / Health / Session 0106 Session 0206 Session 0306 Session / /
Continent
Africa / Europe / /
Country
Norway / Bosnia and Herzegovina / Brazil / United Kingdom / Israel / Finland / Denmark / Italy / Georgia / Luxembourg / Spain / Switzerland / Hungary / Netherlands / Bulgaria / Macedonia / Latvia / South Africa / France / Japan / Iceland / Canada / Australia / Portugal / Slovakia / India / Taiwan / Germany / Romania / Croatia / Slovenia / Serbia / Sweden / Poland / Belgium / Turkey / Russia / Austria / United States / Ukraine / Greece / Ireland / Czech Republic / / /
Event
Product Release / /
Facility
Rare Diseases Coordinating Centre / Leiden University Medical Center / Radboud University Nijmegen Medical Centre / Germany Till Voigtländer Clinical Institute of Neurology / Medical Centre / National Institute / Genomics Education Centre / Johann Wolfgang Goethe University / University Medicine Berlin / Necker Hospital / University Medical Center / UK European Bioinformatics Institute / European Bioinformatics Institute / Institute of Genetic Medicine / Medical University of Vienna / Charles University / German Institute of Medical Documentation / Institute of Genetic Medicine Newcastle University / Scientific Institute of Public Health / University of Lisbon / University of Mainz / University of Cambridge / University of Tübingen / Clinical Institute of Neurology / Andel’s Hotel / Belgium National Institute of Health / Leiden University Medical Centre / Albert-Ludwigs University of Freiburg / Children’s Hospital of Eastern Ontario / Paris Descartes University / University Hospitals Leuven / Academic Medical Center / Aarhus University Hospital / Wellcome Trust Sanger Institute / Newcastle Upon Tyne Hospital / EU Birka Lehmann German Federal Institute / Technical University of Denmark / European Observatory / Institute of Rare Diseases / Royal College of Physicians / / /
IndustryTerm
Rare Disease Therapy / development chain / INTERFACING ON RARE DISEASE THERAPIES / broader healthcare system / specialised management / pharmaceutical medicine / energy / cross-border healthcare / regulatory tools / And Future Policies For Rare Disease Therapies / health information systems / therapeutic medicinal products / healthcare system / mainstream media coverage / Treatment of Orphan Diseases / Rare Disease Therapies / healthcare delivery / therapy for rare disease / medicinal products / media promotion / operational diagnostic and therapeutic tools / healthcare professionals / 200 New Rare Disease Therapies / broader network / Web Communications Senior / genetic alliances network / healthcare / healthcare systems / biotech/pharmaceutical partners / orphan medicinal products / /
MedicalCondition
Chronic Rare Diseases / Most Rare Diseases / diseases / Barriers Empowering Patient Advocates Rare disease / Inherited Metabolic Diseases / PUBLIC-PRIVATE PARTNERSHIP IN THE AREA OF RARE DISEASES / Task Force Rare Diseases / disease / Association Française contre Les Myopathies / Transparent disease / Rare Diseases / Austrian Epidermolysis Bullosa / France Rare disease / CEO Fighting Blindness / Developmental Disorders / Hemiplegia / epidermolysis bullosa / Orphan Diseases / single disease / rare disease / /
MedicalTreatment
stem cell therapy / /
Organization
Technical University of Denmark / Newcastle Upon Tyne Hospital / Wellcome Trust Sanger Institute / World Health Organization / Royal College of Physicians / UK European Bioinformatics Institute / Centre for Medical Systems Biology / Scientific Institute of Public Health / Department of Dermatology / APHP / Swiss Association of Pharmaceutical Professionals / EURORDIS Board of Directors / Children’s Hospital of Eastern Ontario / Joint Research Centre / Swiss National Alliance / Neuromuscular GeneticsMRC Centre for Neuromuscular Diseases / Romania Prader Willi Association / Italian Medicines Agency / Ad-hoc / Centre of Rare Diseases / National Organization for Rare Disorders / FDA / Faculty of Pharmaceutical Medicine / Necker Hospital for Children / Academic Medical Center / Dutch Federation of Cancer Patient Organisations / Hopital Necker / Portugal Lene Jensen Director / Rare Disorders Denmark / Denmark Patrice Régnier Finance & Support Services Unit / Patient Organisation / National Health Service / French Centre / Dutch National Alliance / Directorate for Health Research / Committee for Orphan Medicinal Products / Clinical Institute of Neurology / European Genetic Alliance / Commission for Professional Development / Sweden ORGANISING COMMITTEE / Leiden University / European Federation of Internal Medicine / Genetic & Rare Disorders Organisation / ORGANISING COMMITTEE / German Institute of Medical Documentation and Information / Core Unit for Applied Genomics / University Hospital / DLR Project Management Agency / Society for Mucopolysaccharide Diseases / University of Tübingen / National Centre for Rare Diseases / Italy Emergency Guidelines and Emergency Cards / Albert-Ludwigs University of Freiburg / Paediatric Committee / Medical Centre / Health Research Directorate / International Centre for Life / National Competent Authority / National Institute for Health and Welfare / Johann Wolfgang Goethe University / University of Mainz / Swiss Society of Pharmaceutical Medicine / EU Birka Lehmann German Federal Institute for Drugs and Medical Devices / Aarhus University Hospital / Federal Agency for Medicinal and Health Products / Paris Descartes University / Germany Why / Genomics Unit / European Society for Human Genetics / Institute for Health and Consumer Protection / Institute of Rare Diseases / Task Force for Rare Diseases & Orphan Drugs of EuropaBio-EBE / Germany Till Voigtländer Clinical Institute of Neurology / European Commission / Medicine Foundation / European Gaucher Alliance / European Union / Institute of Genetic Medicine / Institute of Genetic Medicine Newcastle University / NHS / Belgium National Institute of Health / Ministry of Health / Rare Diseases Coordinating Centre / Department of Sociology / Laboratory for Molecular Diagnosis / Alternate / Executive Sum TABLE OF CONTENTS PROGRAMME COMMITTEE / Rare Disease Foundation / Faculty of Medicine / DIA Advisory Council / University Medical Center / Canadian Organization for Rare Disorders / University of Lisbon / Terol / Policy Officer / DG SANCO / Health and Consumers Unit / Leiden University Medical Centre / Berlin Center for Rare Diseases / Radboud University Nijmegen Medical Centre / Medical Classifications Unit / Consumers Unit / Organisation of Healthcare Pathways / National Genetics and Genomics Education Centre / German National Alliance / Executive Office / Charles University / European Medicines Agency / EU PROGRAMME COMMITTEE / France Off-label Use / MRC Centre for Neuromuscular Diseases / University of Cambridge / Romanian National Alliance / University of Vienna / Centre of Expertise / Programme Committee / Executive Agency / Center for Human Genetics / Office of Orphan Products Development / /
Person
Denis Costello / Spiros Vamvakas / Thomas Wagner / Kevin Loth / André Lhoir / Centre / Gert Matthijs / Rémy Choquet / Véronique Héon-Klin / Edmund Jessop / Milan Macek / DG PRE / Sharon Ashton / Enrique Terol / Innovative Medicines / Epidemiology / Emmanuelle Lecomte-Brisset / Variation / Patients Phil Beales / Jeremy Manuel / Rare Disorders / Nick Sireau / Kym Boycott / Christine Lavery / Efforts Peter Robinson / Arnaud de Villeneuve / Marlene Haffner / Durhane Wong Rieger / Peter Bauer / Leena Bruckner-Tuderman / Thierry Laugel / Fabry Shortage Carla Hollak / Damian Smedley / Gauthier Chassang / Domenica Taruscio / Fondazione Telethon / Lesley Greene / Orphan Anesthesia / Anja Helm / Jytte Lyngvig / Christoph Nachtigäller / Thomas Heynisch / Hélène Dollfus / Erik Tambuyzer / François Houyëz / John Dart / Annette Widmann / François Houyez / Maria Mavris / Yann Le Cam / Pierre Sarda / Nathalie Seigneuret / Avril Daly / Ana Rath / Fighting Blindness / Rare Kym Boycott / Genetic / Heidi Wagner / Carla Hollak / Enfants Malades / Tamara Kohler / Breakthroughs Christine Mummery / It Dorica Dan / Daniel Rosenberg / Stefanie Weber / Alexander Kentikelenis / Leeza Osipenko / Carlo Incerti / Frank Ückert / Esther Neiditsch-Prigioni / Kate Bushby / Ole Winther / Stefan Schreck / Gabi Pohla-Gubo / Marc Dooms / Pauline Evers / Hanns Lochmüller / Sabine Sarnacki / Daria Julkowska / Ségolène Aymé / Paolo Siviero / Manuel Posada / Serge Braun / Peter Farndon / Irene Norstedt / Yves Juillet / DG SANCO / Kay Parkinson / Pro Rare / Tino Münster / Georgi Iskrov / / /
Position
Senior Event Manager / EURORDIS / Director / EURORDIS / Guillevin Chairman / Germany Loic / Chief Patient Access Officer / Vice President External Affairs / Editor in Chief / Vice-President of Communications / Chief Scientific Officer / CEO / Professor / Director Public Health / DG Health & Consumers / Information and Access Director / Health Policy Advisor / Manager / EURORDIS / Speaker / Manager of Relations / Wills Hughes-Wilson Chair / coherent and sustainable strategic plan Executive / Chief Patient Access Officer & Vice President External / Director of Research / Director of International Affairs / Patient Access Officer & Vice President External Affairs / Officer / Director / EURORDIS / USA Maria Mavris Therapeutic Development / Cor Oosterwijk Director / Leader / Advocate / EURORDIS / Social Services Executive / Officer / EURORDIS / delegates Executive / President / THEMES Session Chair / Vice-President / CLIMB / Co-Chair / Head of Unit / Personalised Medicine / Managing Partner / Executive / Team Leader / Planning and Development / Vice-President EURORDIS / Chair / treating physician / Director of International Affairs / Advisor / EURORDIS / Director / VSOP / Poster Session Executive / Zielinski Chairman / Switzerland Miroslaw / Parliamentary State Secretary / Vice-President / speaker Georgia 2 South Africa / Professor of Medical Genetics / Chairman / Director / Chair / General Secretary / President / Rare Diseases / Professor of Neuromuscular Genetics / /
Product
Session Chair / Belgium 48 Republic / /
ProvinceOrState
Ontario / Veneto / /
PublishedMedium
Chief / Orphanet Journal / /
Region
Eastern Ontario / Eastern Europe / Middle East / /
Technology
Biotechnology / cell therapy / Stem Cells / Genomics / bioinformatics / drug development / /
7th European Conference on Rare Diseases & Orphan Products 8-10 May 2014, Andel’s Hotel, Berlin, Germany The Rare Disease Puzzle: Bringing the Picture to Life In the past two decades we have identified the pieces that