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From January 2019, Vall d'Hebron Barcelona Hospital Campus is taking over as the headquarters and coordinator of the International Conference on Rare Diseases and Orphan Drugs (ICORD). At the last meeting held in September in Stockholm, the members of the ICORD committee unanimously decided that Vall d'Hebron would be the new head office of the institution and it would be led by Dr. Joan X. Comella, director of the Vall d'Hebron Research Institute (VHIR) and Dr. Manuel Posada, director of the Research Institute for Rare Diseases (IIER) at the Institute of Health Carlos III (ISCIII). At this assembly, Vall d'Hebron was represented by Dr. Guillem Pintos, clinical director of Rare Diseases.
ICORD is an organization that encompasses actors from different sectors linked to rare diseases, from clinical professionals, research staff or representatives of the pharmaceutical industry to patient associations. Precisely, this is one of the distinctive features of the organization. Since its founding in 2007, it has been coordinated by the Karolinska Institute in Stockholm. Dr. Posada is the current chair of the ICORD Board and in the Stockholm assembly it was agreed that he would continue in office along with the Board until the next assembly to facilitate the transition of the ICORD-Stockholm to the ICORD-Barcelona.
The strategic objectives of ICORD are to promote and disseminate knowledge, the treatment and research in rare diseases worldwide, especially in less developed areas or with little experience in organizational models for the global approach to these pathologies.
Accordingly, Vall d'Hebron faces ICORD's leadership being already a reference in the organization of rare diseases with nearly 100 specialists dedicated to the care of more than 300 rare diseases. Apart from being the State hospital that treats more diseases of this type, it is one of the leading hospitals in Europe in this field. In fact, it is part of 10 European reference networks, known as ERNs. This transforms the hospital into a highly specialized center to address rare disease, from birth to adulthood, through a network system that allows sharing of resources and knowledge with other top-notch hospitals.
In addition, different groups at VHIR investigate many of these diseases and the development of new treatments. It is an example of the commitment of Vall d'Hebron to the search for treatments for diseases that do not receive as much attention from the pharmaceutical industry because they affect few patients.
The Vall d'Hebron Campus is part of the following ERNs: craniofacial anomalies and disorders of the ear, nose and throat (skull); pediatric cancer (oncohematology) (paedcan); endocrine conditions (ENDO); hematologic diseases (EuroBloodNet); immunodeficiency, auto-inflammatory and autoimmune diseases (RITA); neuromuscular diseases (EURO-NMD); neurological diseases (RND); kidney disease (ERKNet); respiratory diseases (LUNG) and hereditary metabolic disorders (MetabERN).
This high level of experience will undoubtedly facilitate the fulfillment of the objectives of ICORD in the coming years. For the moment, the next assembly will be held in September 2019 in Israel.
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