ERDERA – European Rare Diseases Research Alliance
Aim
Description
Today, there are about 7000 rare diseases (RDs) affecting more than 300 million people worldwide including 30 million in Europe1. In the European Union, a disease is considered as rare when it affects not more than 1 person in 2,000. Many RDs manifest in childhood, affecting a patient’s entire life and are not treatable with current interventions or medications. Indeed, 95% of RDs are without any therapeutic option. Furthermore, RDs have low,
or extremely low prevalence, lack natural history studies, and even where the genetic origin may be known, there is often a severe lack of knowledge of the downstream pathophysiological mechanisms for conventional drug intervention and heterogeneity of the affected populations. About 50% of rare disease patient do not have a confirmed
molecular diagnosis and the average time for diagnosing a known rare disease is still more than 4 years. Furthermore, 52% of patients and carers confirm that their disease has a severe or highly severe impact on daily life.
The AMBITION of ERDERA is to improve the health and well-being of the 30 million people living with a rare disease in Europe, by making Europe a world leader in RD research and innovation, to support concrete health benefits to rare disease patients, through better prevention, diagnosis and treatment. The Partnership will deliver a RD ecosystem that builds on the successes of previous programmes by supporting robust patient need-led research, developing new diagnostic methods and pathways, spearheading the digital transformational change connecting the dots between care, patient data and research, while ensuring strong alignment of strategies in RD research across countries and regions.
Lead partner
Institut National De La Sante Et De La Recherche Medicale (France)
Partners
- Team – IT Research SL
- German Aerospace Center
- French National Research Agency
- Fondazione Telethon ETS
- Research Council of Lithuania
- The Netherlands Organisation for Health Research and Development
- University of Tübingen
- University of Tartu
- National Center for Genomic Analysis
- Radboud University Nijmegen
- Technical University of Munich
- University Hospital of Heidelberg
- Critical Path Institute
- Institut Català de la Salut
- Leiden University Medical Center
- University of Twente
- Polytechnic University of Madrid
- University Medical Center Groningen
- Amsterdam UMC
- Maastricht University
- EATRIS ERIC
- Foundation for Pharmacological research Gianni Benzi Onlus
- Assistance publique – Hôpitaux de Paris
- Hasselt University
- EURORDIS – Rare Diseases Europe
- Vilnius University Hospital Santaros Klinikos
- University of Coimbra
- Foundation For Rare Diseases
- French Association against Myopathies
- Children's Clinical University Hospital
- Agency for Clinical Research and Biomedical Innovation
- Institute of Molecular Genetics and Genetic Engineering
- Rare Diseases International
- Acıbadem Mehmet Ali Aydınlar University
- AIT Austrian Institute of Technology GmbH
- Aix-Marseille University
- Meyer Children’s Hospital
- Friuli Centrale University Health Authority
- Bar-Ilan University
- Federal Ministry of Education and Research Germany
- St. Anna Children's Hospital
- Centogene AG
- Charité – Universitätsmedizin Berlin
- CheckImmune GmbH
- Centre hospitalier universitaire (Dijon)
- Copenhagen Economics AS
- Region Hovedstaden
- Ministry of Health, Israel
- Consorzio per Valutazioni Biologiche e Farmacologiche
- Stichting Duchenne Data Foundation
- Elsevier
- The Erasmus University Medical Centre
- Belgian National Fund for Scientific Research
- Fraunhofer Society Germany
- Regional Foundation for Biomedical Research, Italy
- European Clinical Research Infrastructure Network
- Austrian Science Fund
- Fraunhofer UK Research Ltd and Fraunhofer Centre for Applied Photonics
- Fundació de recerca Sant Joan de Déu
- Portuguese Foundation for Science and Technology
- Genetic Alliance UK
- Genethon
- Georgian Foundation for Genetic and Rare Diseases
- Stockholm region
- Goethe University Frankfurt
- Health Research Board Ireland
- Izmir Biomedicine and Genome Center
- Icelandic Centre for Research
- IMAGINE Institute
- Institute of Human Genetics of the Polish Academy of Sciences
- Carlos III Health Institute
- The Instituto Nacional de Saúde Dr. Ricardo Jorge
- IRCCS Istituto Ortopedico Rizzoli - Bologna
- Istituto Superiore di Sanita
- Ministero della Salute
- KU Leuven
- Latvian Council of Science
- Mapi Research Trust
- Medical University Sofia
- University Hospital Motol
- Ministry of University and Research
- National Centre for Research and Development, Poland
- National and Kapodistrian University of Athens
- Newcastle University
- Cambridge University Hospitals NHS Foundation Trust
- OUH Odense Universitetshospital
- Bambino Gesù pediatric hospital
- San Raffaele Hospital
- Paracelsus Private Medical University
- The Research Council of Norway
- Research Foundation – Flanders-Belgium
- Riga East Clinical University Hospital
- Research and Innovation Foundation, Greece
- Royal College of Surgeons in Ireland
- Sciensano
- Public service of Wallonia
- Sigmund Freud University Vienna
- Estonian Research Council
- Slovak Academy of Sciences
- Sonio
- Ministry of Social Affairs, Estonia
- Swedish Research Council
- Teddy European Network of Excellence for Paediatric Research
- Real Consulting Data
- Thalassaemia International Federation
- Scientific and Technological Research Council of Türkiye
- Tuscany region
- Autonomous University of Barcelona
- University College Dublin
- Catholic University of the Sacred Heart
- University of Eastern Finland
- Aachen University Hospital
- University Hospital Freiburg
- University of Campania Luigi Vanvitelli
- University of Crete
- Ghent University
- University Medical Center Ljubljana
- Stichting United Parent Projects Muscular Dystrophy
- Uppsala University
- Cadi Ayyad University
- The French National Centre for Scientific Research
- Biomedical Research Networking Centre
- Executive Agency for Higher Education, Research, Development and Innovation Funding
- University of Rome La Sapienza
- University of Leicester
- Bulgarian National Science Fund
- Aalborg University Hospital
- Institute for rare diseases Bulgaria
- BBMRI-ERIC
- Aarhus University Hospital
- International Alliance for Biological Standardization for Europe (IABS-EU)
- Health Research Charities Ireland Company Limited by Guarantee
- Ludwig Maximilian University of Munich
- Université de Lille
- MyScienceWork SAS
- Luxembourg National Research Fund
- National Research, Development and Innovation Fund (NRDI Fund) Hungary
- Federal Institute for Vaccines and Biomedicines Germany
- University of Salzburg
- Queen's University Belfast
- Sorbonne University
- University of Siena
- Vejle Hospital
- Swedish Governmental Agency for Innovation Systems
- Centre for Genomic Regulation
- University College London
- Section of Clinical Genetics, Dept of Clinical Genetics, Pathology and Molecular Diagnostics, Region Skåne, Sweden
- University of Cambridge
- VIB VZW
