Universitat de València has encouraged the creation on the Centre of Rare Diseases, which will work in networking and it will integrate all the research teams of the Valencian Community which work on these specialties. The centre will be presented on Wednesday during the celebration events of the Rare Disease Day.
The beginning of this new teaching and research platform, established in the Institute for Health Research INCLIVA and pioneer of the autonomous regions, will be presented next Wednesday 25th February by the Faculty of Medicine and Dentistry dean of Universitat de València, Federico Pallardó, during the celebration acts of the Rare Disease Day, a conference which will take place in Aula Magna of such faculty (Blasco Ibáñez, 15), organised by the Centre for Biomedical Network Research on Rare Diseases (CIBERER), under the authority of the Health Institute Carlos III.
The constitution of this centre emerges from “the stimulus of the Carlos III Institute”, which expressed us the convenience of making this autonomous platform as for many of our formation and research centres have become an important part of the specialty of rare diseases, both in the national and international regions”, affirms Pallardó.
The scientific director of the INCLIVA Institute for Health Research (Universitat de València-Clinic University Hospital), Josep Redón, says that the new platform appears to “give a common answer to more than the three million affected people of rare diseases of Spain”. In 2014, the European Medicines Agency passed 82 orphan drugs addressed to these pathologies of low prevalence. For this reason, according to the Medicine full university professor, “launching a research and developing treatments which cure or, at the very least, improve the quality of life of ill people is the main object of our researchers. In fact, we want the advance to arrive as fast as possible both to patients and to clinical specialists”. The coordination and collaboration we want to promote from this centre are vitals to improve the efficiency of inverted resources”, underlines Redón.
Furthermore, multilateral convention are expected to be signed so that they make up in the CER-V, from the beginning, the Spanish Federation for Rare Diseases (FEDER), the CIBERER, the Príncipe Felipe Research Centre, the Foundation for the Promotion of Health and Biomedical Research of the Valencian Community (Fisabio) and Health Department. Among the different fields, the new centre will deal with public health, biomedical, epidemiological, clinical and translational research, as for in the teaching field, there will be training clinical courses for health care professionals of specialisation, and a post grade offer, which the online Master in Rare Diseases of Universitat de València stands out.
Likewise, the CIBERER scientific director, Francesc Palau, considers that this platform “is set up with aims of promoting biomedical, clinical and social research of this type of diseases and to work in co-ordination with Valencian institutions such as Universitat de València, Príncipe Felipe Research Centre and INCLIVA, or of national scope such as CIBERER”. Therefore, “it is a great opportunity to stimulate the activities of the researchers and Valencian people who are affected and to show leadership of Valencia in the field of minority diseases”, says Palau.
Among the goals of this centre we find the fundraising of public and private researches to finance the research and co-ordination of projects and also of other tasks, as for example, of public awareness about these diseases and the support and advice of entities of the environment as the Spanish Federation for Rare Diseases (ERDF) and the CIBERER.
Rare Disease Day
The Centre for Biomedical Network Research on Rare Diseases (CIBERER) has organised the VII Conference “To research is to progress” in order to celebrate the Rare Disease Day, which the Faculty of Medicine and Dentistry of Universitat de València will hold, from 10 a.m on 25th Wednesday 25. In the inauguration of the event the Director-General for Planning, Evaluation, Research and Patient Care of the Valencian Department of Health, Teresa de Rojas, Francesc Palau, Federico Pallardó, Josep Redón and Almudena Amaya, FEDER representative in Valencia.
The VII Conference “To research is to progress” is open to public (previous enlistment to the eventos@ciberer.es e-mail or 672 495 444) and it will be divided in two equal parts. In the first one, concrete cases of translational research in rare diseases (MNGIE, Charcot-Marie-Tooth and Menkes disease) will be explained, as for in the second one, researchers and affected people will expose their collaboration in two concrete pathologies: Usher and Opitz C. syndromes.
More information and complete programme in:
Last update: 23 de february de 2015 07:42.
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