RD-Connect Community Members

Organisations and individuals from around the world can become members of RD-Connect to support rare disease research.

Members

Centro Nacional de Analisis Genomico - Centre for Genomic Regulation (CNAG-CRG) (Spain)
Endo-ERN (Netherlands)
ERN CRANIO (Netherlands)
ERN-TransplantChild - Hospital Universitario La Paz- Coordination Centre (Spain)
European Network for Rare and Congenital Anaemias (ENERCA)
European Reference Network For Hereditary Metabolic Diseases (MetabERN)
EURORDIS-Rare Diseases Europe (France)
Fondazione Telethon (Italy)
French Foundation for Rare Diseases (Fondation Maladies Rares) (France)
Golden Helix Foundation (United Kingdom)
INSERM US14 - Orphanet (France)
Institute for Public Health Genomics (IPHG), Maastricht University (Netherlands)
Institute of Molecular Genetics and Genetic Engineering University of Belgrade (Serbia)
Institute of Rare Diseases Research, Instituto de Salud Carlos III (Spain)
International WAGR Syndrome Association (United States)
Istituto Ortopedico Rizzoli (Italy)
Kaleidos onlus (Italy)
Lysogene (France)
Mendelian (United Kingdom)
OpenApp (Ireland)
University of Pisa (Italy)
University of Salamanca (Spain)
Vips Onlus (Italy)

Javier Aparicio Calvo - clinical researcher/clinician, Neuroimage researcher, Hospital Sant Joan de Déu, Esplugues de Llobregat (Spain)
Dorota Badowska - science communication officer, RD-Connect (United Kingdom)
Chiara Baldo - biobank manager - Galliera Genetic Biobank, E.O. Ospedali Galliera (Italy)
Simone Barsotti - clinical researcher/clinician, Azienda Ospedaliero Universitaria Pisana (Italy)
Barbora Benova - clinical researcher/clinician, (Czech Republic)
Stefano Benvenuti - global partnership manager, Fondazione Telethon (Italy)
Riccardo Capecchi - clinical researcher/clinician, University of Pisa (Italy)
Salvador Capella-Gutierrez - basic researcher/scientist, Barcelona Supercomputing Center (BSC) (Spain)
Claudio Carta - basic researcher/scientist, Istituto Superiore di Sanità (Italy)
Claudia Castiglioni - clinical researcher/clinician, Clinica Las Condes (Chile)
Nicolas Chatron - clinical researcher/clinician, Lyon University Hospital (France)
Kristl Claeys - clinical researcher/clinician, University Hospitals Leuven and KU Leuven (Belgium)
Estefanía Conde Blanco - clinical researcher/clinician, Hospital Clinic (Spain)
Sandra Courbier - rare disease patient/patient representative, EURORDIS (France)
Domenico Coviello - Director of a diagnostic laboratory and biobank, E.O. Ospedali Galliera (Italy)
John Dawson - RD-Connect Coordination office, Newcastle University (United Kingdom)
Stefan Deckert - rare disease patient/patient representative, DHAG (Germany)
Blessing Edinoh - , (Nigeria)
Freddie Ehrhart - basic researcher/scientist, Maastricht University (Netherlands)
Bahattin Erdogan - clinical researcher/clinician, basic researcher/scientist, Eskisehir State Hospital (Turkey)
Teresinha Evangelista - clinical researcher/clinician, Institut de Myologie; Groupe Hopitalier Pitié-Salpêtrière (France)
Alex Felice - basic researcher/scientist, University of Malta (Malta)
José María Fernández González - basic researcher/scientist, Barcelona Supercomputing Center - Centro Nacional de Supercomputación (Spain)
Sarah Foye - rare disease patient/patient representative, Team Titin/CMDIR (United States)
Mike Furness - industry representative, TheFirstNuomics (United Kingdom)
Sergio Guber - clinical researcher/clinician, Ottawa Hospital Research Institute (Canada)
Anne Hugon - rare disease patient/patient representative, coordination research rares diseases as professionnal, Filière de santé MR DéFiScience (France)
Annika Jacobsen - basic researcher/scientist, Leiden University Medical Center (Netherlands)
Alexandros Kanterakis - basic researcher/scientist, bioinformatician, Foundation for Research and Technology, Hellas (Greece)
Theodora Katsila - basic researcher/scientist, University of Patras (Greece)
Yllka Kodra - clinical researcher/clinician, National Center for Rare Diseases (Italy)
Jane Larkindale - regulatory scientist and patient group rep., Critical Path Institute (United States)
Hanns Lochmüller - clinical researcher/clinician, Centro Nacional de Análisis Genómico (Spain)
Estrella López Martín - clinical researcher/clinician, basic researcher/scientist, Instituto de Salud Carlos III (ISCIII) (Spain)
Adrienne Lovett - rare disease patient/patient representative, (United States)
Richard Lynn - basic researcher/scientist, British Paedaitric Surveillane Unit (United Kingdom)
Deborah Mascalzoni - researcher ethicist, Uppsala University (Sweden)
Leslie Matalonga - clinical researcher/clinician, Centro Nacional de Analisis Genomico - Centre for Genomic Regulation (CNAG-CRG) (Spain)
Pauline McCormack - sociologist, Newcastle University (United Kingdom)
Catherine McGrath - clinical researcher/clinician, University of Birmingham (United Kingdom)
Roxana Merino Martinez - basic researcher/scientist, Karolinska Institute (Sweden)
Eugenia Mosci - research assistant, IRCCS G. Gaslini - PRINTO (Italy)
Selvakumar Munusamy - Faculty, Sree Amman Arts and Science College (India)
Filipa Novais - clinical researcher/clinician, Hospital de Santa Maria (Portugal)
Christine Ong - rare disease patient/patient representative, (Philippines)
Sonja Pavlovic - basic researcher/scientist, Institute of Molecular Genetics and Genetic Engineering University of Belgrade (Serbia)
Antonio Piga - clinical researcher/clinician, Division of Pediatrics & Hemoglobinopathies Centre - San Luigi University Hospital (Italy)
Denis Puthier - bioinformatician, laboratoire INSERM TAGC/INSERM (France)
Michael Olander Rasmussen - rare disease patient/patient representative, HSP (Denmark)
Robert Reihs - basic researcher/scientist, Medical Unioversity of Graz (Austria)
Miriam Rodrigues - clinical researcher/clinician, Auckland DHB (New Zealand)
Marco Roos - basic researcher/scientist, Leiden University Medical Center (Netherlands)
Gary Saunders - rare disease policymaker, ELIXIR Europe (United Kingdom)
Fumi Takeuchi - clinical researcher/clinician, National Center of Neurology and Psychiatry (Japan)
Rasa Traberg - clinical researcher/clinician, Hospital of Lithuanian University of Health Sciences Kauno klinikos (Lithuania)
Chiuhui Mary Wang - RD project manager, Fondazione Telethon (Italy)
Andreas Zankl - clinical researcher/clinician, Children's Hospital Westmead (Australia)

Sergi Beltran - Centro Nacional de Análisis Genómico (CNAG-CRG) (Spain)

Christophe Beroud - Aix-Marseille University - INSERM (France)

Niklas Blomberg - ELIXIR (United Kingdom)

Matteo Giovanni Della Porta - Humanitas Research Hospital & Humanitas University (Italy)

Joaquin Dopazo - Fundacion Progreso y Salud (Spain)

Encarna Guillén-Navarro - Hospital V. Arrixaca/ Universidad Murcia/ IMIB-Arrixaca (Spain)

Manoj Jaiswal - Icahn School of Medicine at Mount Sinai (United States)

Eleni Katsantoni - Biomedical Research Foundation, Academy of Athens (Greece)

Jan Kirschner - Universitätsklinikum Freiburg (Germany)

Sebastian Köhler - Charite Berlin (Germany)

Jan-Eric Litton - Karolinska Institutet (Sweden)

José Luis Oliveira - University fo Aveiro (Portugal)

Milan Macek - Charles University Prague - 2nd Faculty of Medicine (Czech Republic)

George Patrinos - University of Patras Department of Pharmacy (Greece)

Luisa Politano - University of Campania/University Hospital "Luigi Vanvitelli" (Italy)

Julia Reichelt - EB House Austria, Dermatology, Paracelsus Medical University (Austria)

Marco Roos - Leiden University Medical Center (Netherlands)

Richard Roxburgh - Auckland DHB (New Zealand)

David Salgado - Aix-Marseille University -- INSERM (France)

Paul Schofield - University of Cambridge (United Kingdom)

Morris Swertz - UMCG Dept Genetics/Genomics Coordination Center CB50 (Netherlands)

Peter-Bram t Hoen - Radboudumc Nijmegen - Centre for Molecular and Biomolecular Informatics (Netherlands)

Alfonso Valencia - Barcelona Supercomputing Center (BSC) (Spain)

Richard van Wijk - University Medical Center Utrecht (Netherlands)

Maria Margarida Venâncio - Centro Hospitalar e Universitário de Coimbra (Portugal)

Alain Verloes - ERN-ITHACA (France)

Join the RD-Connect Community!

Membership is free of charge and open to any individual, organisation or research group willing to adhere to the Constitution. Sign up and become a member of our Community.
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