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Inserm (French National Institute of Health and Medical Research), as coordinator of SUPPORT-IRDiRC, invites you at the press event at: Camp Nou
24 January 2013 — 24 January 2013
Inserm (French National Institute of Health and Medical Research), as coordinator of SUPPORT-IRDiRC, invites you at the press event at: Camp Nou, Barcelona, 24 January 2013 at 15:30 Avenida d'Arístides Maillol, s/n, 08028 Barcelona, Spain
International experts will explain the latest cutting-edge approaches to medical research in the rare disease field at a press conference to celebrate the launch of 38 million EUR of funding from the European Commission for rare disease research and therapy development.
This is an opportunity to meet the scientists, clinicians, patient representatives and policymakers involved in driving the advances in rare disease research and find out about the key collaborations being established through a new global initiative. Leaders in the field will explain how research and next-generation technologies aim to improve diagnosis and develop new therapies for patients with rare diseases.
The press conference and Q&A will be followed by an exclusive tour of Camp Nou.
The International Rare Diseases Research Consortium (IRDiRC) was launched in April 2011 to foster international collaboration in rare disease research, a highly challenging area of medical research that has the potential to benefit tremendously from the recent advances in genomics, proteomics and other omics technologies. 80% of rare diseases have a genetic component, and despite their individual rarity, they are collectively so numerous that they affect as many as 1 person in every 17. IRDiRC has set itself the bold aims of delivering 200 new rare disease therapies and diagnosis for all rare diseases by the year 2020. Spearheaded by the European Union and the United States National Institutes of Health, the IRDiRC now numbers 29 members across the world.
Four of the European Union’s flagship IRDiRC projects are being launched in Barcelona this January, providing 38 million EUR of funding for cutting-edge research and collaboration over the next six years. By increasing diagnosis rates, enabling global cooperation and putting new potential therapies into the drug development pipeline, these projects will help ensure tangible benefits for patients with these historically neglected conditions are seen by 2020.
Scientific Director, CIHR Institute of Genetics and Chair-Elect, IRDiRC Executive Committee
Director, DG Research Health Directorate, European Commission and Chair, IRDiRC Executive Committee
Coordinator of SUPPORT-IRDiRC
Emeritus Research Director, INSERM
Ivo Gut (event host)
RD-Connect data platform lead
Director, Centre Nacional d'Anàlisi Genòmica, Barcelona
Coordinator of EURenOmics
Head, Division of Pediatric Nephrology, Heidelberg University Medical Center, Germany
Coordinator of Neuromics
Head, Institute of Human Genetics, University of Tübingen, Germany
Coordinator of RD-Connect
Professor of Experimental Myology, Newcastle University, UK
The agenda of the day:
3.30 pm: Press conference
Monica Ensini (EURORDIS, Paris France) and Anna Kole (NORD, USA) will introduce the burden of being affected by a rare disease from the point of view of patients and the involvement of patient organisations in research activities.
Hugh Dawkins (Ministry of Health of Western Australia) will provide the perspective on international collaboration for rare diseases and the IRDiRC plan to address the identified bottlenecks in order to speed up research.
Ségolène Aymé (Inserm, Paris, France) will present fact sheets on the rare disease research field.
Hanns Lochmüller (NewCastle-upon-Tyne, UK) will describe how RDConnect is going to provide the tools the research community is expecting to translate as quickly as possible the avalanche of new discoveries coming from the genomics field into new tests and new therapies.
Olaf Riess (Unniversity of Tübingen , Germany) will give specific examples of what can be achieved for degenerative neurologic and neuro-muscular diseases.
Franz Schäfer (Heidelberg University Medical Centre, Germany) will do the same for renal diseases.
Ivo Gut (Centre Nacional d'Anàlisi Genòmica, Barcelona) will give a flavour of the technologic revolution which is going to be turned into major breakthrough for the benefit of the patients.
4.15 pm: Question and answer session
4.45 pm: Coffee break
5.00 pm: An exclusive guided tour of the Camp Nou will end the eventful day