Become a member of the RD-Connect Community!
Organisations and individuals from around the world can become members of RD-Connect to support rare disease research.
What is the RD-Connect Community?
The RD-Connect Community is an independent, non-governmental, not-for-profit, international association of individuals and organizations sharing the vision of building an open community that works to improve rare disease research. The Community’s mission is to promote, facilitate and accelerate rare disease research by maximizing the availability and (re)use of rare disease data and biosamples through provision of infrastructure, tools and services to share, analyse and link datasets and biosamples in a secure and regulated way. By promoting data sharing and analysis tools and the data sharing ethos among rare disease researchers and clinicians and by raising awareness among patient communities and policy makers, the community aims to maximise the impact of the tools and services developed by RD-Connect members.
By bringing together experts from diverse backgrounds, including clinicians, academics, geneticists, bioinformaticians, ethicists and patient representatives, the RD-Connect Community combines various approaches to support rare disease research.
History
RD-Connect was established in November 2012 as a 6-year project financed by the European Commission under an FP7 grant. That multidisciplinary consortium developed an integrated platform of tools and resources to improve data analysis, sharing and linkage in rare disease research. In May 2017, the consortium decided to continue its work beyond the end of the FP7 funding period (October 2018) as the RD-Connect Community.
Membership
Benefits of joining RD-Connect
As part of the RD-Connect Community, members can actively participate in shaping the rare disease field, promote data sharing and reuse, advance research and contribute to improving human health. This includes:
- working towards the IRDiRC 2017-2027 Vision of enabling all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention;
- promoting data analysis and sharing in rare disease research through the RD-Connect tools: Genome-Phenome Analysis Platform, Registry & Biobank Finder and Sample Catalogue;
- educating the rare disease field on key issues in the field through international meetings and conferences;
- involving patients and working closely with the patient organizations;
- training and educational activities to teach the rare disease community about data analysis and stewardship;
- developing and promoting ethical, legal and societal guidelines, best practice standards and policies for rare disease data sharing, data stewardship and data analysis.
Members are invited to participate in RD-Connect annual meetings and community events and to work together, share information about research projects, funding opportunities and other opportunities that might support the aims of RD-Connect.
RD-Connect is founded on the principles of collaboration, multidisciplinarity, reciprocity, patient benefit and respect for privacy and autonomy. Members have freedom of scientific enquiry and receive appropriate recognition for their contribution to the field.
Members are entitled to vote on the strategy and direction of the community’s activities. They can also vote on the Community’s Coordinator and well as candidate to become one.
How can members contribute?
Members are encouraged to contribute to the aims and activities of the Community in as many ways as possible. This could include:
- Sharing data and biosamples through the tools and resources developed by RD-Connect
- Acting as an ambassador for the Community and promoting it through networks and events
- Collaborating with other members to improve diagnosis and therapy in rare diseases
- Regularly attending community events and meetings
- Participating in decision-making and priority-setting activities, actively engaging with the Community and voting on leadership and other important issues
- Suggesting and participating in relevant grant opportunities and other funding mechanisms to continue the work of the Community
- Promoting the values of collaboration, multidisciplinarity and reciprocity
Who can become a member?
Membership of RD-Connect is open to organisations, research groups and individuals engaged in rare disease research anywhere in the world. This includes members from diverse backgrounds such as clinicians, academics, bioinformaticians, data scientists, ethicists, patient advocates and others.
To apply for membership, please complete the membership application below. Membership applications will be approved by the Community Executive Committee. By accepting the RD-Connect Constitution, all members of RD-Connect commit themselves to adhering to and promoting the Mission, Vision and Guiding Principles of RD-Connect as defined in the Constitution.
Constitution of the RD-Connect Community
Governance
The RD-Connect Community is governed by the Community Executive Committee (CEC), composed of multidisciplinary members, including at least two patient representatives. The CEC is led by the Chair, Chair Elect and Past Chair, elected by voting every 2 years.
Current Chair
Alberto Orfao
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Alessandra Renieri
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Alex MacKenzie
Position: [types field=’job-title’][/types]
Organisation: CARE4RARE
Alexander Felice
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Alexandra Fiott
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Alexandre Mejat
Alfonso Valencia
Position: [types field=’job-title’][/types]
Organisation: Barcelona Supercomputing Center (BSC)
Ana Rath
Position: [types field=’job-title’][/types]
Organisation: INSERM US14 – Orphanet
Ana Villaverde Hueso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
André Blavier
Position: [types field=’job-title’][/types]
Organisation: Interactive Biosoftware
Andrés García-Montero
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Andrew Devereau
Position: [types field=’job-title’][/types]
Organisation: National Genetics Reference Laboratory Manchester
Annika Jacobsen
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Anthony J Brookes
Position: [types field=’job-title’][/types]
Organisation: University of Leicester
Avril Palmeri
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Barbara Garavaglia
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Bartha Knoppers
Position: [types field=’job-title’][/types]
Organisation: McGill University
Caroline Graham
Position: [types field=’job-title’][/types]
Organisation: Office of Population Health Genomics (OPHG)
Caron Molster
Chiara Baldo
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Chris Sotirelis
Position: [types field=’job-title’][/types]
Organisation: unaffiliated
Christophe Béroud
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
Claudio Carta
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Clint Mizzi
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Corrado Angelini
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Daniel Renault
Position: [types field=’job-title’][/types]
Organisation: FEDERG Initiative
David Salgado
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
David Koubi
Position: [types field=’job-title’][/types]
Organisation: Finovatis
David van Enckevort
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Groningen (UMCG)
Davide Piscia
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Deborah Mascalzoni
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Domenica Taruscio
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Dorota Badowska
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Dorthe Lykke
Elena Bravo
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Eleni Katsantoni
Position: [types field=’job-title’][/types]
Organisation: Biomedical Research Foundation of Academy of Athens
Elizabeth Vroom
Eric P Hoffman
Position: [types field=’job-title’][/types]
Organisation: Children’s National Medical Center
Erik Steinfelder
Position: [types field=’job-title’][/types]
Organisation: Erik Steinfelder
Estrella López Martín
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Francesc Palau
Position: [types field=’job-title’][/types]
Organisation: Centre for Biomedical Network Research on Rare Diseases
Françoise Rouault
Franz Schaefer
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Heidelberg
George Potamias
Position: [types field=’job-title’][/types]
Organisation: Foundation for Research and Technology – Hellas (FORTH)
George Patrinos
Position: [types field=’job-title’][/types]
Organisation: University of Patras
Giuseppe Merla
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Gwenaëlle Collod-Beroud
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
Hanns Lochmüller
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Hugh Dawkins
Position: [types field=’job-title’][/types]
Organisation: Office of Population Health Genomics (OPHG)
Ichizo Nishino
Position: [types field=’job-title’][/types]
Organisation: National Center of Neurology & Psychiatry (NCNP)
Inge Schwersenz
Isabel Hermosilla Gimeno
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Ivo Gut
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Jan Taylor
Position: [types field=’job-title’][/types]
Organisation: National Genetics Reference Laboratory Manchester
Jan Kirschner
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Freiburg
Jan-Eric Litton
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Javier Alonso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Jean-Jacques Cassiman
Position: [types field=’job-title’][/types]
Organisation: Jean-Jacques Cassiman
Jennifer Viberg
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Joanna Vella
Position: [types field=’job-title’][/types]
Organisation: University of Malta
John Dawson
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
José Luis Oliveira
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
José María Fernández
Position: [types field=’job-title’][/types]
Organisation: Barcelona Supercomputing Center (BSC)
Joseph Irwin
Position: [types field=’job-title’][/types]
Organisation: Lakeside Regulatory Consulting Services Ltd.
Julian Isla
Position: [types field=’job-title’][/types]
Organisation: Dravet Syndrome Foundation
Justin Paschall
Position: [types field=’job-title’][/types]
Organisation: European Bioinformatics Institute
Kate Bushby
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Katharina Beier
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Göttingen
Kay Parkinson
Kristina Hettne
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Kurt Zatloukal
Position: [types field=’job-title’][/types]
Organisation: Medical University of Graz
Kym Boycott
Position: [types field=’job-title’][/types]
Organisation: CARE4RARE
Larry Hunter
Position: [types field=’job-title’][/types]
Organisation: University of Colorado Denver
Libby Wood
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Lincoln Stein
Position: [types field=’job-title’][/types]
Organisation: Ontario Institute for Cancer Research
Lucia Monaco
Position: [types field=’job-title’][/types]
Organisation: Fondazione Telethon
Luisa Politano
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Lydie Lemonnier
Position: [types field=’job-title’][/types]
Organisation: Vaincre la Mucoviscidose
Manuel Posada
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Marc Hanauer
Position: [types field=’job-title’][/types]
Organisation: INSERM US14 – Orphanet
Marco Roos
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
María Almeida
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Maria Ramos
Position: [types field=’job-title’][/types]
Organisation: Maria Ramos
Marieke van Meel
Marina Mora
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Marta Girdea
Position: [types field=’job-title’][/types]
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Martin Fransson
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Mary Wang
Position: [types field=’job-title’][/types]
Organisation: Fondazione Telethon
Mats Hansson
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Matt Bellgard
Position: [types field=’job-title’][/types]
Organisation: Centre for Comparative Genomics, Murdoch University
Maurizio Moggio
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Meral Özgüç
Position: [types field=’job-title’][/types]
Organisation: Hacettepe University
Michael Brudno
Position: [types field=’job-title’][/types]
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Michael Orth
Position: [types field=’job-title’][/types]
Organisation: University Hospital of Ulm
Milan Macek
Position: [types field=’job-title’][/types]
Organisation: Charles University
Mirella Filocamo
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Morris Swertz
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Groningen (UMCG)
Muriel Gevrey
Nenad Blau
Position: [types field=’job-title’][/types]
Organisation: University of Zurich
Niklas Blomberg
Position: [types field=’job-title’][/types]
Organisation: ELIXIR
Olaf Riess
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Tübingen
Paola Torreri
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Paul Flicek
Position: [types field=’job-title’][/types]
Organisation: European Bioinformatics Institute
Pauline McCormack
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Pedro Sernadela
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
Pedro Lopes
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
Per Nilsson
Position: [types field=’job-title’][/types]
Organisation: unaffiliated
Peter Robinson
Position: [types field=’job-title’][/types]
Organisation: Jackson Laboratory for Genomic Medicine
Peter-Bram ’t Hoen
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Rachel Thompson
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Rainald von Gizycki
Position: [types field=’job-title’][/types]
Organisation: PRO RETINA Deutschland e.V.
Roseline Favresse
Position: [types field=’job-title’][/types]
Organisation: Fondation Maladies Rares
Roxana Merino Martinez
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Sabina Gainotti
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Samantha Parker
Position: [types field=’job-title’][/types]
Organisation: LYSOGENE
Sébastien Degot
Position: [types field=’job-title’][/types]
Organisation: Finovatis
Serge Braun
Position: [types field=’job-title’][/types]
Organisation: Association Française contre les Myopathies (AFM)
Sergi Beltran Agulló
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Séverine Lair
Position: [types field=’job-title’][/types]
Organisation: Interactive Biosoftware
Sigurður Hólmar Jóhannesson
Position: [types field=’job-title’][/types]
Organisation: AHC Federation of Europe
Simon Woods
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Sonja Pavlovic
Position: [types field=’job-title’][/types]
Organisation: Institute of Molecular Genetics and Genetic Engineering University of Belgrade (IMGGE)
Stefan Deckert
Position: [types field=’job-title’][/types]
Organisation: Deutsche-Heredo-Ataxie-Gesellschaft (DHAG)
Stefano Goldwurm
Position: [types field=’job-title’][/types]
Organisation: Stefano Goldwurm
Steven Laurie
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Theodora Katsila
Position: [types field=’job-title’][/types]
Organisation: University of Patras
Tudor Groza
Position: [types field=’job-title’][/types]
Organisation: Garvan Institute of Medical Research
Ulla Rudsander
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Vanessa Rangel Miller
Position: [types field=’job-title’][/types]
Organisation: PatientCrossroads
Veronica Popa
Position: [types field=’job-title’][/types]
Organisation: MCT8-AHDS Foundation
Verónica Alonso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Vinciane Pirard
Position: [types field=’job-title’][/types]
Organisation: Genzyme Europe B.V.
Virginia Corrochano
Position: [types field=’job-title’][/types]
Organisation: Centre for Biomedical Network Research on Rare Diseases
Virginie Bros-Facer
Position: [types field=’job-title’][/types]
Organisation: EURORDIS – Rare Diseases Europe
Yaffa Rubinstein
Position: [types field=’job-title’][/types]
Organisation: Yaffa Rubinstein
Yann Le Cam
Position: [types field=’job-title’][/types]
Organisation: EURORDIS – Rare Diseases Europe
Yllka Kodra
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Past Chair
Alberto Orfao
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Alessandra Renieri
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Alex MacKenzie
Position: [types field=’job-title’][/types]
Organisation: CARE4RARE
Alexander Felice
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Alexandra Fiott
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Alexandre Mejat
Alfonso Valencia
Position: [types field=’job-title’][/types]
Organisation: Barcelona Supercomputing Center (BSC)
Ana Rath
Position: [types field=’job-title’][/types]
Organisation: INSERM US14 – Orphanet
Ana Villaverde Hueso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
André Blavier
Position: [types field=’job-title’][/types]
Organisation: Interactive Biosoftware
Andrés García-Montero
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Andrew Devereau
Position: [types field=’job-title’][/types]
Organisation: National Genetics Reference Laboratory Manchester
Annika Jacobsen
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Anthony J Brookes
Position: [types field=’job-title’][/types]
Organisation: University of Leicester
Avril Palmeri
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Barbara Garavaglia
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Bartha Knoppers
Position: [types field=’job-title’][/types]
Organisation: McGill University
Caroline Graham
Position: [types field=’job-title’][/types]
Organisation: Office of Population Health Genomics (OPHG)
Caron Molster
Chiara Baldo
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Chris Sotirelis
Position: [types field=’job-title’][/types]
Organisation: unaffiliated
Christophe Béroud
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
Claudio Carta
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Clint Mizzi
Position: [types field=’job-title’][/types]
Organisation: University of Malta
Corrado Angelini
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Daniel Renault
Position: [types field=’job-title’][/types]
Organisation: FEDERG Initiative
David Salgado
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
David Koubi
Position: [types field=’job-title’][/types]
Organisation: Finovatis
David van Enckevort
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Groningen (UMCG)
Davide Piscia
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Deborah Mascalzoni
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Domenica Taruscio
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Dorota Badowska
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Dorthe Lykke
Elena Bravo
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Eleni Katsantoni
Position: [types field=’job-title’][/types]
Organisation: Biomedical Research Foundation of Academy of Athens
Elizabeth Vroom
Eric P Hoffman
Position: [types field=’job-title’][/types]
Organisation: Children’s National Medical Center
Erik Steinfelder
Position: [types field=’job-title’][/types]
Organisation: Erik Steinfelder
Estrella López Martín
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Francesc Palau
Position: [types field=’job-title’][/types]
Organisation: Centre for Biomedical Network Research on Rare Diseases
Françoise Rouault
Franz Schaefer
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Heidelberg
George Potamias
Position: [types field=’job-title’][/types]
Organisation: Foundation for Research and Technology – Hellas (FORTH)
George Patrinos
Position: [types field=’job-title’][/types]
Organisation: University of Patras
Giuseppe Merla
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Gwenaëlle Collod-Beroud
Position: [types field=’job-title’][/types]
Organisation: Aix-Marseille University Medical School
Hanns Lochmüller
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Hugh Dawkins
Position: [types field=’job-title’][/types]
Organisation: Office of Population Health Genomics (OPHG)
Ichizo Nishino
Position: [types field=’job-title’][/types]
Organisation: National Center of Neurology & Psychiatry (NCNP)
Inge Schwersenz
Isabel Hermosilla Gimeno
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Ivo Gut
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Jan Taylor
Position: [types field=’job-title’][/types]
Organisation: National Genetics Reference Laboratory Manchester
Jan Kirschner
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Freiburg
Jan-Eric Litton
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Javier Alonso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Jean-Jacques Cassiman
Position: [types field=’job-title’][/types]
Organisation: Jean-Jacques Cassiman
Jennifer Viberg
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Joanna Vella
Position: [types field=’job-title’][/types]
Organisation: University of Malta
John Dawson
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
José Luis Oliveira
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
José María Fernández
Position: [types field=’job-title’][/types]
Organisation: Barcelona Supercomputing Center (BSC)
Joseph Irwin
Position: [types field=’job-title’][/types]
Organisation: Lakeside Regulatory Consulting Services Ltd.
Julian Isla
Position: [types field=’job-title’][/types]
Organisation: Dravet Syndrome Foundation
Justin Paschall
Position: [types field=’job-title’][/types]
Organisation: European Bioinformatics Institute
Kate Bushby
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Katharina Beier
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Göttingen
Kay Parkinson
Kristina Hettne
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Kurt Zatloukal
Position: [types field=’job-title’][/types]
Organisation: Medical University of Graz
Kym Boycott
Position: [types field=’job-title’][/types]
Organisation: CARE4RARE
Larry Hunter
Position: [types field=’job-title’][/types]
Organisation: University of Colorado Denver
Libby Wood
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Lincoln Stein
Position: [types field=’job-title’][/types]
Organisation: Ontario Institute for Cancer Research
Lucia Monaco
Position: [types field=’job-title’][/types]
Organisation: Fondazione Telethon
Luisa Politano
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Lydie Lemonnier
Position: [types field=’job-title’][/types]
Organisation: Vaincre la Mucoviscidose
Manuel Posada
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Marc Hanauer
Position: [types field=’job-title’][/types]
Organisation: INSERM US14 – Orphanet
Marco Roos
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
María Almeida
Position: [types field=’job-title’][/types]
Organisation: National DNA Bank-Carlos III. University of Salamanca
Maria Ramos
Position: [types field=’job-title’][/types]
Organisation: Maria Ramos
Marieke van Meel
Marina Mora
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Marta Girdea
Position: [types field=’job-title’][/types]
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Martin Fransson
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Mary Wang
Position: [types field=’job-title’][/types]
Organisation: Fondazione Telethon
Mats Hansson
Position: [types field=’job-title’][/types]
Organisation: Uppsala University
Matt Bellgard
Position: [types field=’job-title’][/types]
Organisation: Centre for Comparative Genomics, Murdoch University
Maurizio Moggio
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Meral Özgüç
Position: [types field=’job-title’][/types]
Organisation: Hacettepe University
Michael Brudno
Position: [types field=’job-title’][/types]
Organisation: The Centre for Computational Medicine, Hospital for Sick Children, Toronto
Michael Orth
Position: [types field=’job-title’][/types]
Organisation: University Hospital of Ulm
Milan Macek
Position: [types field=’job-title’][/types]
Organisation: Charles University
Mirella Filocamo
Position: [types field=’job-title’][/types]
Organisation: Telethon Network of Genetic Biobanks
Morris Swertz
Position: [types field=’job-title’][/types]
Organisation: University Medical Center Groningen (UMCG)
Muriel Gevrey
Nenad Blau
Position: [types field=’job-title’][/types]
Organisation: University of Zurich
Niklas Blomberg
Position: [types field=’job-title’][/types]
Organisation: ELIXIR
Olaf Riess
Position: [types field=’job-title’][/types]
Organisation: Universitätsklinikum Tübingen
Paola Torreri
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Paul Flicek
Position: [types field=’job-title’][/types]
Organisation: European Bioinformatics Institute
Pauline McCormack
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Pedro Sernadela
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
Pedro Lopes
Position: [types field=’job-title’][/types]
Organisation: University of Aveiro
Per Nilsson
Position: [types field=’job-title’][/types]
Organisation: unaffiliated
Peter Robinson
Position: [types field=’job-title’][/types]
Organisation: Jackson Laboratory for Genomic Medicine
Peter-Bram ’t Hoen
Position: [types field=’job-title’][/types]
Organisation: Leiden University Medical Center
Rachel Thompson
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Rainald von Gizycki
Position: [types field=’job-title’][/types]
Organisation: PRO RETINA Deutschland e.V.
Roseline Favresse
Position: [types field=’job-title’][/types]
Organisation: Fondation Maladies Rares
Roxana Merino Martinez
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Sabina Gainotti
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)
Samantha Parker
Position: [types field=’job-title’][/types]
Organisation: LYSOGENE
Sébastien Degot
Position: [types field=’job-title’][/types]
Organisation: Finovatis
Serge Braun
Position: [types field=’job-title’][/types]
Organisation: Association Française contre les Myopathies (AFM)
Sergi Beltran Agulló
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Séverine Lair
Position: [types field=’job-title’][/types]
Organisation: Interactive Biosoftware
Sigurður Hólmar Jóhannesson
Position: [types field=’job-title’][/types]
Organisation: AHC Federation of Europe
Simon Woods
Position: [types field=’job-title’][/types]
Organisation: Newcastle University
Sonja Pavlovic
Position: [types field=’job-title’][/types]
Organisation: Institute of Molecular Genetics and Genetic Engineering University of Belgrade (IMGGE)
Stefan Deckert
Position: [types field=’job-title’][/types]
Organisation: Deutsche-Heredo-Ataxie-Gesellschaft (DHAG)
Stefano Goldwurm
Position: [types field=’job-title’][/types]
Organisation: Stefano Goldwurm
Steven Laurie
Position: [types field=’job-title’][/types]
Organisation: Centro Nacional de Análisis Genómico
Theodora Katsila
Position: [types field=’job-title’][/types]
Organisation: University of Patras
Tudor Groza
Position: [types field=’job-title’][/types]
Organisation: Garvan Institute of Medical Research
Ulla Rudsander
Position: [types field=’job-title’][/types]
Organisation: Karolinska Institutet
Vanessa Rangel Miller
Position: [types field=’job-title’][/types]
Organisation: PatientCrossroads
Veronica Popa
Position: [types field=’job-title’][/types]
Organisation: MCT8-AHDS Foundation
Verónica Alonso
Position: [types field=’job-title’][/types]
Organisation: Instituto de Salud Carlos III
Vinciane Pirard
Position: [types field=’job-title’][/types]
Organisation: Genzyme Europe B.V.
Virginia Corrochano
Position: [types field=’job-title’][/types]
Organisation: Centre for Biomedical Network Research on Rare Diseases
Virginie Bros-Facer
Position: [types field=’job-title’][/types]
Organisation: EURORDIS – Rare Diseases Europe
Yaffa Rubinstein
Position: [types field=’job-title’][/types]
Organisation: Yaffa Rubinstein
Yann Le Cam
Position: [types field=’job-title’][/types]
Organisation: EURORDIS – Rare Diseases Europe
Yllka Kodra
Position: [types field=’job-title’][/types]
Organisation: Istituto Superiore di Sanità (ISS)