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13/04/2017

Vall d'Hebron, again with the World Week of Primary Immunodeficiencies

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13/04/2017

From 22 to 29 April a new edition of this event is celebrated, which wants to raise awareness about this group of minority diseases.

The Vall d'Hebron Barcelona Hospital Campus joins one more year the http://bit.ly/13wFR5f" World Week of Primary Immunodeficiencies with the celebration of 7 activities throughout the week from the 22 to 29 of April. Normal1 One of them will be the conference given by Dr. Ann Gardulf, from the http://bit.ly/2oYwdth" Karolinska University Hospital, Stockholm, Sweden, within the http://bit.ly/2oq5Iz2" cycle of seminars of the Vall d'Hebron Research Institute (VHIR). She will do it on Tuesday, April 25th at 3:30 pm in the auditorium on the ground floor of the General Hospital. Normal1 Dr. Gardulf will address the situation of both children and adults who have primary antibody deficiencies and who need lifelong replacement therapy with immunoglobulin G (IgG) and important practical issues, mainly with respect to the subcutaneous route of administration.On the other hand, she will also discuss the need for this therapy to be safe and effective, as well as the importance of educating patients and their environment in the use of the therapy to improve patients' quality of life and minimize the risk of side effects. Normal1 World Primary Immunodeficiency Week Normal1 The World Primary Immunodeficiency Week aims to promote awareness of these diseases worldwide and Vall d'Hebron Barcelona Hospital Campus collaborates with the http://bit.ly/1FFaLMt" BCN-PID Foundation and the http://bit.ly/1aNAmbO" Jeffrey Modell Foundation in New York. A total of 7 activities are planned throughout the week. Normal1 The central event of this week of awareness will arrive on the 27th, at 8:00 pm, with a mapping video that wants to raise awareness of the importance of early detection through the neonatal screening of the SCID (severe combined immunodeficiencies) in Catalonia. In collaboration with the Health Departament, the Jeffrey Modell Foundation and the company http://bit.ly/2oWYfbX" nueveojos will be screened on the facade of the Ave Maria Pavilion of the Maternity ward of Barcelona. Normal1 Another of the main tools to make the PID visible will be the animated video "Què són les IDPs?" (What are PIDs?, in English), aimed at patients, families and society as a whole. It will premiere on April 22, the same day that, once again, balloons will be launch for the PID. The great news is that it will be done in a virtual way and linked to the Facebook profile of the Jeffrey Modell Foundation. Each time the video is shared, a symbolic balloon will be launched. Normal1 Events at the Vall d'Hebron Campus Normal1 The Vall d'Hebron Campus will also host events for the PID Week. From April 24th, the vestibule of the Maternal and Child Hospital will be the scene of the exhibition "The 3D Immunitari system," that will show the pieces developed by the students of the Jesuit School of Sant Gervasi after visiting Vall d'Hebron. Normal1 A day later, the conference of Dr. Ann Gardulf will take place, of which we have already spoken previously. Normal1 The PIDs Normal1 Primary immunodeficiencies are a group of more than 250 so-called rare diseases, affecting 1 in 2,000 new-borns in Catalonia. They are congenital and often hereditary pathologies, characterized by an insufficient or non-existent immune response to external or internal aggressions. The most serious form is severe combined immunodeficiency (SCID). They are the so-called bubble children. Normal1 Vall d'Hebron is, through the http://bit.ly/1UeWCvi" Unit of Infectious Pathology and Immunodeficiencies of Paediatrics (UPIIP), leader in the attention to paediatric patients affected by these diseases. The UPIIP diagnoses 70% of those diagnosed in Catalonia. It treats more than 700 patients, (410 of whom are paediatric). In addition, its work in the http://bit.ly/1EbAqNZ" Immunology Service, in collaboration with the Unit of Transplantation of Hematopoietic Progenitors of the http://bit.ly/oncologia_ped" Paediatric Oncology and Hematology Service, among other services, places the Hospital among the centres of reference in the European area. As a differential fact with respect to other centres, it has a program of transition from the paediatric patient to the adults' units, within the transversal program of minority diseases. In addition, Vall d'Hebron is the referral centre for positive cases in neonatal screening of SCIDs. Normal1 The UPIIP is, since last September, the first centre of the country to be recognized as a centre of excellence by the Jeffrey Modell Foundation. At the same time, the Vall d'Hebron Campus participates since December in the European reference network on primary immunodeficiencies (ERN RITA). Vall d'Hebron is the centre with the highest number of ERNs in the country, 10.http://bit.ly/2o8fzqj" Programa d'activitats de la Setmana Mundial de les Immunodeficiències PrimàriesEvent http://bit.ly/2o8jVh1" El cribratge és vida

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