List of Participants
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20134309D03-00OTHGBIS_List of participants 7th European Conference on Rare Diseases & Orphan Products The Rare Disease Puzzle: Bringing the Picture to Life 08-10 May 2014 Andel’s Hotel, Berlin, Germany List of Participants A conference organised Co-organised 20134309D03-00OTHGBIS_List of participants 2 Last Name First Name Company Country Aarum Stiina European Medicines Agency United Kingdom Adams Christoph Cydan Development, Inc. United States Adjibi Yolande Orphan dev France Agarwal Sonalee Biogen Idec United States Aijmer Rydsjö Celia Göteborgs Universitet Sweden Aksnes Stein Are Oslo University Hospital, Norwegian Resource Services on Rare Diseases Norway Alahouzou Zoe EURORDIS France Ala-Mello Sirpa Rinnekoti Foundation Norio Centre Finland Alastalo Tero-Pekka Blueprint Genetics Finland Aleksovska Stojmirova Vesna Life With Challenges Former Yugoslav Republic Of Macedonia Ali Farhana Rare Diseases UK United Kingdom Allcorn Richard Comradis United Kingdom Alonso Veronica Rare Disease Resarch Institute Spain Alsmeier Gerhard VHL Germany Germany Ambrosini Anna Fondazione Telethon Italy Ancochea Alba The Spanish Federation of Rare Diseases (FEDER) Spain Andric Adriana Croatian Agency for Medicinal Products and Medical Devices Croatia (Hrvatska) Andrusova Ekaterina National Association of organissations Russian Federation Angin Celine APHP BNDMR France Aras Luis Miguel Dravet Syndrome Foundation Spain Arellanesova Anna Czech Cystic Fibrosis Association Czech Republic Arnould Benoit Mapi France Arreghini Lidia Novartis Region Europe Italy Ashton Sharon EURODIS France Astray Mochales Jenaro Area of Epidemiology, Health Department Spain of the Autonomous Government of Madrid Atalaia Antonio Eucerd Joint Action United Kingdom Ayme Segolene Orphanet-Inserm France Babac Ana Hannover University, Institut für Versicherungsbetriebslehre Germany Badenoch Charlotte EURORDIS France Baede Patricia Kinesis Pharma B.V. Netherlands Baggi Fulvio AIM Associazione Italiana Miastenia Grave ONLUS - Milano Italy Baleydier Claudie A.F.A.F France Barisic Ingeborg Children's University Hospital Zagreb Croatia (Hrvatska) Barman-Aksözen Jasmin Swiss Society for Porphyria (SGP) Switzerland Barrett Timothy Birmingham Children's Hospital United Kingdom Barske Julia Kindness for Kids Germany Bartholomew Victoria Dancing Eye Syndrome Support Trust United Kingdom Bathen Trine TRS national resource centre for rare disorders, Sunnaas rehabilitation Hospital Norway Bauer Peter University of Tuebingen Germany Beales Philip UCL Institute of Child Health United Kingdom Beaverson Katherine Pfizer, Inc. United States Bednarz Marcelina Polish National Alliance ORPHAN Poland Beekhuizen Niels ORION Clinical Services United Kingdom Bellagambi Simona UNIAMO Italy Bellandi Michele Shire International GmbH Switzerland Belyakov Denis RICOoDB “Union of patient and patient’s organization with rare diseases” Russian Federation Bera Lena CSL Behring Germany Berckmans Vinciane H.A.E. Belgium Belgium Berglöf Anna Karolinska Institutet Sweden Berglund Britta Rare Diseases Sweden Sweden Bergsaker David Frambu Resource Centre for Rare Disorders Norway Bertrand Thomas Association Francaise du Syndrome de Rett (AFSR) France Bevec Dorian Switzerland Bignami Fabrizia GlaxoSmithKline United Kingdom Billmeyer Brett LAL Solace United States Björkerud Stina Göteborgs Universitet Sweden Bladen Catherine TREAT-NMD United Kingdom Blandin Gaelle Aix-Marseille University Inserm UMR_S910 France Blichfeldt Susanne Danish Prader-Willi Association Denmark Bloechl-Daum Brigitte Medical University of Vienna / Department of Clinical Pharmacology Austria Bojtor Pogányné Zsuzsanna HUFERDIS / HWSA Hungary Bok Amanda European Haemophilia Belgium Bokolishvil Ana Georgian Foundation for genetic and rare diseases Georgia Bokta Signe National Healt Service Latvia Boncz Beata Hungarian Williams Syndrome Association Hungary Bonjean Jill EURORDIS France Borton Eliza inVentiv Health United Kingdom Borzacchiello Camillo Stabilimento Chimico Farmacutico Militare Italy Bosanska Lenka Charite Universitaetsmedizin Berlin,Centre of Excellence for Rare Metabolic Dis. Germany Bottarelli Valentina EURORDIS France Boudes Mathieu EURORDIS France Bovy Nathalie Radboud University Medical Center, Nijmegen Netherlands Boycott Kym Childrens Hospital of Eastern Ontario Research Institute Canada Boysen Henrik Balle HAEi Denmark Braun Serge AFM (Association Francaise contre Les Myopathies) France Brazier Joanne Canterbury Christ Church University United Kingdom 20134309D03-00OTHGBIS_List of participants 3 Last Name First Name Company Country Bruckner-Tudermann Leena University Medical Center Germany Brunsmann Frank Achse, E.V. Germany Brunstetter Frank Medeva Pharmaceuticals United States Buchberger Sophie Frankfurt University Hospital Germany Buisson Anne Association François Aupetit France Bundgaard Nanna Baumann NF Denmark Denmark Bushby Katharine Newcastle Upon Tyne Hospital United Kingdom Butzeck Barbara EFAPH Germany Cagniard Barbara IRDiRC France Campabadal Marta EURORDIS France Campion Giles Prosensa Netherlands Capkova Hana Shire Czech Republic Carganico Germano Pharma Quality Europe Italy Carl Patricia Bundesverband Kleinwuchsige Germany Carrion Tudela Juan FEDER Spain Carroll Geoffrey Welsh Health Specialised Services United Kingdom Castro Raquel EURORDIS France Cederroth Helene Wilhelm Foundation Sweden Cederroth Mikk Wilhelm Foundation Sweden Celano Antonella APMAR ONLUS Italy Chantelot Emmanuel Shire Belgium Chappell Lara EURORDIS France Chassang Gauthier INSERM France Chicano Gema FEDER Spain Chin Alex AstraZeneca United States Choquet Remy Necker Hospital for Children France Ciampa Serena Ospedale Pediatrico Bambino Italy Cichy Wojciech Polish Foundation Matio Poland Clarinval Caroline Federal Office of Public Health Switzerland Coccetti Amanda Arcoiris onlus Italy Colombo Daniele Zambon S.P.A Italy Cooper Suzy FEWS United Kingdom Corrochano Virginia Ciber Spain Cortelazzo Alessio Azienda Ospedaliera Universitaria Senese Italy Costantino Nadia BOKS Belgium Costello Denis EURORDIS France Courtois Francoise EFAPH European Federation of Associations of Patients with Haemochromatosis France Covic Nikolina Croatian Alliance for Rare Diseases Croatia (Hrvatska) Cox Timothy University of Cambridge United Kingdom Crocco Gerline Selbsthilfegruppe für PXE-Erkrankte Deutschlands e.V. Germany Crocione Claudia HHT Onlus Italy Csimma Cristina Wyeth Research United States Cuddy Brendan European Medicines Agency United Kingdom Cuk Karmen DEBRA Slovenia Slovenia Daby Sabine DEBRA Germany Germany Dallapiccola Bruno Ospedale Pediatrico Bambino Gesu Italy Daly Avril Fighting Blindness Ireland D'Amato Sizonenko Loredana Orphanet Switzerland Switzerland Dan Dorica Romanian Prader Willi Association Romania Darapolska Anzelika National Health Service Latvia Dart John DEBRA UK United Kingdom Daturi Alessia Telethon Fondazione Italy Davies Eleanor Biogen IDEC United Kingdom Dávila Vanegas Magdalena Deutsches Institut für Medizinische Dokumentation und Information (DIMDI) Germany De Baere Lut BOKS Belgium De Boeck Kris European CF Society, Clinical Trial Network Belgium De Cecco Mariolino University of Trento Italy de Chalendar Myriam Orphanet France de Kalbermatten Christine ProRaris Switzerland de Knecht-van Eekelen Annemarie VSOP Netherlands de Lary de Latour Thibault Alexion Services Europe SPRL Belgium De Lillo Anna Quintiles United States de Montleau Béatrice Association francaise contre les Myopathies France De Ridder Ri RIZIV-INAMI Belgium De Santis Marta Istituto Superiore di Sanità, National Center for rare Diseases (Rome) Italy Delli Zotti Marco Pro-Test Italia Germany Denzel Christiane Genzyme Corporation United States Derks Mareike Orphanet, Institute of Human Genetics Germany Di Giacinto Martina Orphanet Italy Di Pardo Alba IRCCS Neuromed Italy Dierking Anna Institute of Human Genetics, Hannover Medical School Germany Dignan Terry EURORDIS Ireland Dobosz Paula Instytut Genetyki Generacja Poland Dollfus Helene Hôpital de Hautepierre France Dooms Marc University Hospitals Leuven Belgium Du Plessis Kelly Rare DIsease Society of SA South Africa Duboka Davor National Organisation for Rare Diseases of Serbia Serbia Duguet Christophe AFM-TELETHON France 20134309D03-00OTHGBIS_List of participants 4 Last Name First Name Company Country Dupont Alain Vrije Universiteit Brussel, Faculty of Medicine and Pharmacy Belgium Dziargama Justyna Polish National Alliance ORPHAN Poland Eatwell Emma Sobi Belgium Eckelmann Norbert SHG Glykogenose Germany Eisenberg-Geginat Monika European Dysmelia Reference Information Centre (ED Germany Elbers Rembert BfArM Germany Esposito Antonella Angeli Noonan Italy Evangelista Teresinha Eucerd Joint Action United Kingdom Evers Pauline Federation of Cancer Patient Organisations Netherlands Exner Alexander German Federal association of vascular birth deformities Germany Fall Doudou STABILITY OF REORIENTATION AND WELL BEIN Gambia Fandrup Sven Rare Disorders Denmark Denmark Fantacci Piero MENARINI RICERCHE S.p.A. Italy Faria Ines Alianca Portuguesa associacoes doencas raras Portugal Farndon Peter NHS National Genetics Education & Development Centre United Kingdom Favresse Roseline French Foundation for rare diseases France Feider-Rohen Shirley ALAN asbl Luxembourg Feldman-Cegiela Arleta Team Sanfilippo Poland Fenton Brian Shire Human Genetic Therapies United States Fernandez - Aldeguer Isabel D'Genes Spain Fernandez de Gamboa Marta Asociacion nacional Amigos de Arnold Chiari ANAC Spain Fernández González José María