Contacts:

Position: Technical Director Assistant of the BNADN
Organisation: National DNA Bank-Carlos III. University of Salamanca
Area of work: Biobanks

Position: Head of Human Genetic Branch. Area Manager
Organisation: Instituto de Salud Carlos III
Area of work: Biobanks, Registries

Position: Head of RD Epidemiological Unit
Organisation: Instituto de Salud Carlos III
Area of work: Biobanks, Registries

Position: Director Neuromuscular Bank
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: RD-Connect Science Communication and Impact Coordinator
Organisation: Newcastle University
Area of work: Impact

Position: Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Research Fellow; Dept. of Medical Ethics and History of Medicine
Organisation: University Medical Center Göttingen
Area of work: Ethical Legal Social Issues

Position: Professor
Organisation: Centre for Comparative Genomics, Murdoch University
Area of work: Bioinformatics

Position: Bioinformatics Analysis Group Leader Data Analysis Team Leader
Organisation: Centro Nacional de Análisis Genómico
Area of work: Platform

Position: Assistant Professor of Genetics, head of the bioinformatics team at the UMR_S 910 research unit
Organisation: Aix-Marseille University Medical School
Area of work: Bioinformatics

Position: Professor of Clinical Biochemistry
Organisation: University of Zurich
Area of work: Biobanks

Position: CEO
Organisation: Interactive Biosoftware
Area of work: Bioinformatics

Position: Medical Geneticist, Regional Genetics Program Investigator, CHEO Research Institute Associate Professor, University of Ottawa
Organisation: CARE4RARE

Position: Senior Researcher
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Registries

Position: Professor in Bioinformatics and Genomics
Organisation: University of Leicester

Position: Research Infrastructure Project Manager
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Ethical Legal Social Issues

Position: Principal Investigator
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Area of work: Data linkage

Position: Professor of Neuromuscular Genetics
Organisation: Newcastle University
Area of work: Impact

Position: Researcher
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Registries

Position: Professor at K.U.Leuven
Organisation: Jean-Jacques Cassiman
Area of work: Management

Position: Full-time Senior Researcher (1st class)
Organisation: Aix-Marseille University Medical School
Area of work: Bioinformatics

Position: Biobank Coordinator
Organisation: Centre for Biomedical Network Research on Rare Diseases
Area of work: Biobanks

Position: Director
Organisation: Office of Population Health Genomics (OPHG)
Area of work: Bioinformatics, Registries

Position: Communications & Data Helpdesk Coordinator at RD-Connect
Organisation: Newcastle University
Area of work: Impact, Platform

Position: Member of DHAG , DHAG-Representative for Neuromics Project
Organisation: Deutsche-Heredo-Ataxie-Gesellschaft (DHAG)
Area of work: Ethical Legal Social Issues

Position: Consultant
Organisation: Finovatis
Area of work: Management

Position: Director, NGRL Manchester
Organisation: National Genetics Reference Laboratory Manchester
Area of work: Bioinformatics

Position: Regional Delegate in charge of International Affairs
Organisation: Fondation Maladies Rares
Area of work: Impact

Position: Professor
Organisation: University of Malta
Area of work: Biobanks, Ethical Legal Social Issues, Impact

Position: TNGB Coordinator and Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Research Support Officer I/ BioBank Assistant
Organisation: University of Malta
Area of work: Biobanks, Ethical Legal Social Issues, Impact

Position: Team Leader and Senior Scientist
Organisation: European Bioinformatics Institute
Area of work: Bioinformatics

Position: Project Leader
Organisation: Karolinska Institutet
Area of work: Biobanks

Position: Researcher
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Ethical Legal Social Issues, Registries

Position: Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Technical Director of the BNADN
Organisation: National DNA Bank-Carlos III. University of Salamanca
Area of work: Biobanks

Organisation: CMT France
Area of work: Ethical Legal Social Issues

Position: Project Lead
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Area of work: Bioinformatics

Position: Biobank Director
Organisation: Stefano Goldwurm
Area of work: Biobanks

Position: Manager – Service Planning, Office of Population Health Genomics
Organisation: Office of Population Health Genomics (OPHG)
Area of work: Bioinformatics, Registries

Position: Chief Technology Officer and Senior Research Officer
Organisation: Garvan Institute of Medical Research
Area of work: Bioinformatics

Position: Director of CNAG
Organisation: Centro Nacional de Análisis Genómico
Area of work: Platform

Position: Chief Technology Officer
Organisation: INSERM US14 – Orphanet

Position: Professor of Biomedical Ethics
Organisation: Uppsala University
Area of work: Ethical Legal Social Issues

Position: Senior Researcher
Organisation: Leiden University Medical Center
Area of work: Data linkage

Position: Associate professor at Leiden University Medical Center
Organisation: Leiden University Medical Center
Area of work: Data linkage

Position: Professor
Organisation: Children’s National Medical Center

Position: Director, Center for Computational Pharmacology & Computational Bioscience Program
Organisation: University of Colorado Denver
Area of work: Bioinformatics

Position: Member of SMA Support UK
Organisation: Lakeside Regulatory Consulting Services Ltd.
Area of work: Ethical Legal Social Issues

Position: Founder and Chairman
Organisation: Dravet Syndrome Foundation
Area of work: Ethical Legal Social Issues

Position: FAIR data steward
Organisation: Leiden University Medical Center
Area of work: Data linkage

Position: President of AHC Federation of Europe
Organisation: AHC Federation of Europe
Area of work: Ethical Legal Social Issues

Position: Senior Research Fellow and Academic Scholar
Organisation: University of Patras
Area of work: Bioinformatics, Impact

Position: Consultant Pediatric Neurologist, Deputy Head of Division
Organisation: Universitätsklinikum Freiburg

Position: Director of the Centre of Genomics and Policy
Organisation: McGill University
Area of work: Ethical Legal Social Issues

Position: Medical researcher
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Registries

Position: Chief Executive Officer
Organisation: Finovatis
Area of work: Management

Position: Bioinformatics Engineer
Organisation: Interactive Biosoftware
Area of work: Bioinformatics

Position: Senior Data Analyst, Data Analysis Team
Organisation: Centro Nacional de Análisis Genómico
Area of work: Platform

Position: Chief Executive Officer
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Ethical Legal Social Issues

Position: Registry Manager
Organisation: Vaincre la Mucoviscidose
Area of work: Ethical Legal Social Issues

Position: Director
Organisation: Karolinska Institutet
Area of work: Biobanks

Position: Professor of Experimental Myology
Organisation: Newcastle University
Area of work: Management

Position: Professor
Organisation: Hôpital Robert Debré
Area of work: Ethical Legal Social Issues

Position: Bioinformatics Research Assistant
Organisation: University of Aveiro
Area of work: Bioinformatics

Position: Postdoctoral Researcher
Organisation: Instituto de Salud Carlos III
Area of work: Biobanks, Registries

Organisation: Euro HSP
Area of work: Ethical Legal Social Issues

Position: Head of Department of Biology and Medical Genetics
Organisation: Charles University
Area of work: Impact, Registries

Position: Professor, Dept of Pediatrics , University of Ottawa
Organisation: CARE4RARE

Position: Researcher
Organisation: Uppsala University
Area of work: Ethical Legal Social Issues

Position: Senior Lecturer
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

Position: Project leader, Developer
Organisation: Karolinska Institutet
Area of work: Biobanks

Position: Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Research Support Officer II/ PhD Student
Organisation: University of Malta
Area of work: Biobanks, Ethical Legal Social Issues, Impact

Position: Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Organisation: Office of Population Health Genomics (OPHG)
Area of work: Bioinformatics, Ethical Legal Social Issues, Registries

Position: Chief Scientific Officer
Organisation: Fondazione Telethon
Area of work: Biobanks

Position: Head of Muscle Cell Biology Lab
Organisation: EuroBioBank
Area of work: Biobanks

Position: Biobank Director and Head of Muscle Cell Biology Lab
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Independent advisor
Organisation: Per Nilsson

Position: Director, Department of Neuromuscular Research
Organisation: National Center of Neurology & Psychiatry (NCNP)

Position: Associate Professor
Organisation: University of Aveiro
Area of work: Bioinformatics

Position: Scientific Director of the BNADN
Organisation: National DNA Bank-Carlos III. University of Salamanca
Area of work: Biobanks

Position: Professor of Neurology
Organisation: University Hospital of Ulm
Area of work: Biobanks, Registries

Organisation: Meral Özgüç
Area of work: Biobanks

Position: Pediatrician, Medical Geneticist, Research Professor
Organisation: Centre for Biomedical Network Research on Rare Diseases

Position: Project Assistant
Organisation: Newcastle University
Area of work: Management

Position: Chief Patient Affairs/Health Policies Officer
Organisation: LYSOGENE

Organisation: Alstrom Syndrome UK
Area of work: Ethical Legal Social Issues

Position: Team Leader - Variation
Organisation: European Bioinformatics Institute
Area of work: Bioinformatics

Position: Assistant Professor of Pharmacogenomics and Pharmaceutical Biotechnology
Organisation: University of Patras
Area of work: Bioinformatics, Impact

Position: Director Public Affairs EMEA
Organisation: Genzyme Europe B.V.
Area of work: Impact

Position: Software Engineer, Data Analysis Team
Organisation: Centro Nacional de Análisis Genómico
Area of work: Platform

Position: TNGB partner (Biobank Director)
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Allan-Herndon-Dudley Patient Advocate
Organisation: Veronica Popa
Area of work: Ethical Legal Social Issues

Position: Director, Institute of Rare Diseases Research
Organisation: Instituto de Salud Carlos III
Area of work: Biobanks, Registries

Position: Principal Researcher
Organisation: Foundation for Research and Technology – Hellas (FORTH)
Area of work: Bioinformatics

Position: Software Engineer, Data Analysis Team
Organisation: Centro Nacional de Análisis Genómico
Area of work: Platform

Position: Technical Director Assistant of the BNADN
Organisation: Maria Ramos
Area of work: Impact, Registries

Position: VP Genetic Services
Organisation: PatientCrossroads
Area of work: Platform, Registries

Position: Director
Organisation: INSERM US14 – Orphanet

Position: Coordinator
Organisation: FEDERG Initiative
Area of work: Ethical Legal Social Issues

Position: Biobank Director
Organisation: Telethon Network of Genetic Biobanks
Area of work: Biobanks

Position: Head of the Institute of Medical Genetics and Applied Genomics
Organisation: Universitätsklinikum Tübingen

Position: Professor of Computational Biology
Organisation: Jackson Laboratory for Genomic Medicine
Area of work: Data linkage

Position: Senior researcher
Organisation: Leiden University Medical Center
Area of work: Data linkage

Position: Project Leader
Organisation: Karolinska Institutet
Area of work: Biobanks

Position: Research Engineer
Organisation: Aix-Marseille University Medical School
Area of work: Bioinformatics

Position: Head of Division of Paediatric Nephrology and KFH Children’s Kidney Center
Organisation: Universitätsklinikum Heidelberg

Organisation: Deutsche Gesellschaft fuer Muskelkranke (DGM), Initiative SMA
Area of work: Ethical Legal Social Issues

Position: Clinical Trials Officer
Organisation: AKU Society

Position: Software Engineer
Organisation: University of Aveiro
Area of work: Bioinformatics

Position: Trustee Advisor
Organisation: UK Thalassaemia Society
Area of work: Ethical Legal Social Issues

Position: Platform Leader, Informatics and Bio-computing
Organisation: Ontario Institute for Cancer Research
Area of work: Bioinformatics

Position: Harold Macmillan Professor of Medicine
Organisation: Newcastle University
Area of work: Management

Position: Head of Genomics Coordination Center
Organisation: University Medical Center Groningen (UMCG)
Area of work: Biobanks, Registries

Position: Director
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Registries

Position: Clinical Bioinformatician and Trainer – NGRL/Nowgen
Organisation: National Genetics Reference Laboratory Manchester
Area of work: Bioinformatics

Position: RD-Connect Communications and Data Platform Manager
Organisation: Newcastle University
Area of work: Management, Platform

Position: Researcher
Organisation: Istituto Superiore di Sanità (ISS)
Area of work: Registries

Position: DMD Programme Coordinator
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

Position: Director of the Structural Biology and Biocomputing Programme
Organisation: Centro Nacional de Investigaciones Oncológicas
Area of work: Bioinformatics

Position: Project Manager
Organisation: University Medical Center Groningen (UMCG)
Area of work: Biobanks, Data linkage

Organisation: NephcEurope Foundation
Area of work: Biobanks, Ethical Legal Social Issues

Position: Research Support Officer II/ BioBank Assistant
Organisation: University of Malta
Area of work: Biobanks, Ethical Legal Social Issues, Impact

Position: Student
Organisation: Uppsala University
Area of work: Ethical Legal Social Issues

Position: Head of Biobank
Organisation: Instituto de Salud Carlos III
Area of work: Biobanks, Registries

Position: Honorary President
Organisation: PRO RETINA Deutschland e.V.
Area of work: Ethical Legal Social Issues

Organisation: Elizabeth Vroom
Area of work: Ethical Legal Social Issues

Position: Research Program Manager
Organisation: Fondazione Telethon
Area of work: Biobanks

Position: RD-Connect Project Manager
Organisation: Newcastle University
Area of work: Management

Position: Senior Lecturer and Co-Director PEALS
Organisation: Newcastle University
Area of work: Ethical Legal Social Issues

Position: Pathologist, Vice-Chair of the Institute of Pathology
Organisation: Medical University of Graz
Area of work: Biobanks

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