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22/01/2018

Bufa la bombolla donates more than 7,000 euros for the PID Foundation

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22/01/2018

Bufa la bombolla is an initiative of the parents of a girl with a primary immunodeficiency to raise funds for research into these diseases.

Núria and Pep, are the parents of Martina, a 7-year-girl who suffers a primary immunodeficiency. As a result of the illness of her daughter and to raise awareness among the population about these so little-known diseases, they launched the campaign "Bufa la bombolla!" (Blow the bubble, in English) An initiative that has collected more than 7,000 euros for research on primary immunodeficiencies (PID) and have donated to the http://www.pidfoundationbcn.org/ Barcelona PID Foundation.The Barcelona PID Foundation has a collaboration agreement with the Vall d'Hebron Research Institute (VHIR) and the Catalan Association of Primary Immune Deficiencies (ACADIP). Its president is Dr. Pere Soler Palacín, head of the http://bit.ly/1UeWCvi" Infectious Pathology and Paediatric Immunodeficiencies Unit (UIIP) of Vall d'Hebron and head of the research group on Infection in Immunocompromised Paediatric Patients from VHIR.Bufa la bombolla!"With the Blow the bubble! campaign, we spread the word on these diseases and we collaborate in the research carried out at the Barcelona PID Foundation", explains Núria Tomàs, Martina's mother."We think that blowing a bubble could be a perfect analogy with our will to make dissemination of the PIDs in order to improve the quality of life of patients. So, we decided that we would sell jars of bubble soap to raise funds," she said.At this early stage of the campaign almost 4,000 jars of bubble soap have been sold among friends, merchants, local associations, schools, etc. The next step is to work in conjunction with the PID Foundation to expand this campaign. In this sense, Anna Fábregas, psychologist of the Infectious Pathology and Paediatric Immunodeficiency Unit of Vall d'Hebron and member of the research group on Infection in Immunocompromised Paediatric Patients from VHIR, explains that, "for a long time the PID Foundation was looking for a product or an idea that help raise awareness about these diseases and now, with the jar of bubble soap, they have found it."The PIDThe primary immunodeficiencies are a group of more than 250 of the so-called rare diseases affecting one in every 2,000 babies born alive in Catalonia. They are congenital and hereditary diseases often characterized by inadequate, or non-existent, response of the immune system to exterior or interior aggressions. The most serious one is the severe combined immunodeficiency (SCID). They are the so-called bubble children.Vall d'Hebron is a leader in attention to paediatric patients affected by these diseases through the http://bit.ly/1UeWCvi" Unit of Infectious Pathology and Paediatrics Immunodeficiencies, (UPIIP). The UPIIP diagnoses 70% of the PID detected in Catalonia and treats more than 700 patients, (410 of them paediatrics). In addition, their work with the http://bit.ly/1EbAqNZ" Immunology Service, in collaboration with the Haematopoietic Stem Cell Transplant Unit of the http://bit.ly/oncologia_ped" Paediatric Haematology and Oncology Service, among other services, place the Hospital among the centres of reference in Europe. As a differentiating factor compared to other centres, it has a program of transition from paediatric patients to the adult units, within the cross-program of rare diseases, and the project of comprehensive care to patients "I have that PID, I'm not alone," which provides psychological support to children and their families. In addition, Vall d'Hebron is the centre of derivation in positive cases in neonatal screening of SCID.The UPIIP has been the first in the country to be recognized as a centre of excellence by the Jeffrey Modell Foundation.

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