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20/12/2016

Vall d’Hebron is the Hospital in Spain with more European networks of reference for rare diseases

ERN_884

20/12/2016

VHIR will participate in 10 reference networks that will allow researchers to exchange information about pacients and scientific developments

Vall d'Hebron University Hospital and Vall d'Hebron Institute of Research (VHIR) are part of 10 European networks of reference for rare diseases (known as ERNs) since this December. Vall d'Hebron Campus is the site that obtained more networks in Spain, of 42 networks obtained, 10 are for Vall d'Hebron , 16 for other Catalan hospitals and 16 for hospitals of the rest of Spain. The appointment as a reference site will allow the patients to access to a multidisciplinary team of experts from all Europe, specialized in treat and research cases similar to theirs.ERNs are a new commitment of the European Commission to link health centers with a high specialization in certain rare diseases. The objective of the networks is improve the access to diagnosis and treatment, and offer the best assistance to the patients, of any place in Europe, with diseases which require a particular concentration of resources and a high degree of expertise.In all, the professionals of Vall d'Hebron will participate in the European networks of paediatric oncology (PO-ERN), rare endocrine diseases (ENDO-ERN), immunologic deficiencies (ERN RITA), rare neuromuscular diseases (Neuromuscular-ERN), rare paediatric renal and hepatic diseases (ERK-Net), rare genetic metabolic disease (METAB-ERN), Rare Lung Diseases, rare anemias (EURO BLOOD NET), rare cardiac diseases (ERN Rare Cardiac çDiseases: Congenital Heart Diseases), and Rare Craniofacial anomalies and otorhinolaryngology (ERN Rare Caniofacial anomalies and ENT).With this achievement, the manager of the Hospital, Dr. Vicenç Martínez Ibáñez, ensures that "with the effort, the competence and excellence of our professionals, we achieved that Vall d'Hebron Campus became a European reference site in the medical care and research of rare diseases". To obtain these accreditations the manager highlights that "the clue is the work of the structure if the site direction, that has work closely to the professionals, giving them the maximum support".Benefits for patients and professionalsERNs arise after several years of demands of European federations of patients with rare diseases to achieve a system that allow people of any place in the European Union to be diagnosed and treated with the maximum guarantee. Now, the patients not only will achieve this attention with the new networks but also clinicians in person or in a remote way may follow them.All site in the network will work under the same protocols and will drive a sample bank for each rare disease, in case they did not have one yet. This way, the professionals may see and share more cases per year, and perform research with anonymous samples obtained under the same guidelines. Moreover, the accreditation as a member of the reference networks positions the professionals of Vall d'Hebron in the first line of international research and of health care and involves an opportunity of participating actively in the activities and courses organized by each network.CSUR experienceTo become part of an ERN, the health care units and research units passed several external evaluations, after proving they offered a highly qualified attentions of this kind of diseases and that they count with a research team that publishes in the principal scientific journals. Additionally, an indispensable requirement to become part of these networks was to count with a recognition of excellence issued by the local government and that, in this case, it is the designation of the Reference Units of the National Health System (known as CSUR in Spanish).With the two accreditations obtained in 2016, Vall d'Hebron is nowadays the hospital with more CSUR in Spain, with 26 units, more than La Paz University Hospital in Madrid, Sant Joan de Déu Hospital in Barcelona and La Fe University Hospital in Valencia.Vall d'Hebron Campus has more than 100 specialists dedicated to the attention and follow up of adults and children who suffer rare diseases. In total, they perform research of near 200 rare diseases, of 26 different clinical areas. More than 250 clinical trials have been performed. On the other side, since 2015, the hospital has the Rare Diseases Unit, where the professionals develop a model of multidisciplinary care of these patients.

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