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13/03/2019

Bufa la Bombolla to promote the investigation of primary immunodeficiencies in Vall d'Hebron, with Abacus and Barcelona PID Foundation

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13/03/2019

Support research and help raise awareness about PIDs with the solidarity bubble jars that you can buy at Abacus stores and share videos and photos with the hashtag #BufaLaBombolla on social networks.

Vall d'Hebron Hospital Campus has launched, along with Abacus and the Barcelona PID Foundation, the Bufa la Bombolla campaign. The objective is to raise funds for the Primary Immunodeficiency (PID) and to raise awareness to the society about this group of more than 400 genetic basis diseases that, in the most serious form, suffer the known one as bubble children, for the maximum protection they have to live in order to prevent possible infectionsThis initiative was born with Martina, an eight years old girl from Malgrat de Mar, who was diagnosed with a primary immunodeficiency at the age of four and underwent a bone marrow transplant. "We think that blowing the bubble is the perfect action to illustrate our desire for the society to have more knowledge about immunodeficiency. So we started selling bubble jars to help the research" says her mother Núria Tomàs.Now, the solidarity jars of Bufa la Bombolla are available at Abacus stores, at a cost of 2,50 euros that will be used for the research of PIDs in Vall d'Hebron. You can also help with the divulgation of the PIDs by sharing at social networks videos and photos doing bubbles wherever you go with the hashtag #BufaLaBombolla. All the benefits of the campaign, which is sponsored by Antonio Díaz- El Mago Pop, will go to Barcelona PIF Foundation, a non-profit organization created by a group of professionals dedicated to the paediatric care pf the PIDs and the relatives of the affected children and that supports PIDs research at the Vall d'Hebron Research Institute (VHIR). In the first phase, Bufa la Bombolla has already collected more than 15.000 euros thanks to the sale of 6.755 jars, which have been given entirely to the Barcelona PID Foundation."Primary immunodeficiencies are diseases that, although are more frequents that multiple sclerosis, lupus or cystic fibrosis they are mull less known to the population and the professionals, which can lead to a delay in the diagnosis and can aggravate the prognosis of those affected", explains Dr. Pere Soler, head of the Infectious Pathology and Immunodeficiencies unit of Paediatrics in Hospital Infantil Vall d'Hebron, head of the research group inhttp://en.vhir.org/web_vhir/portal1/grup-equip.asp?s=recerca&contentid=186977&idrefer=186977 Infection in Immunocompromised Pediatric Patients and president of the Barcelona PID Foundation. As it goes on, among the open research lines to which Bufa la Bombolla can help, stand out those that improve diagnostic techniques at the genetic level and optimize curative treatments, especially in bone marrow transplants and gene therapy.The importance of an early diagnosisVall d'Hebron has launched several initiatives to ensure an early diagnosis. It is the receptor center for patients diagnoses with severe combined immunodeficiency, from a pioneer program in Europe in neonatal screening through the heel test, which affect every year between 1 and 4 babies in Catalonia. They also create the PIDCAP app, which allows detect the PID in primary care before the first clinical manifestations appear. This computer tool integrated within the Estació Clínica d'Atenció Primària (ECAP), is based in an algorithm that collect clinical variables that alert the family medicine facultative or the primary care paediatric about the possibility that the patient may suffer these diseases. "There are clear data that show that primary immunodeficiencies that had a late diagnosis have a worse prognosis" warns Dr. Pere Soler."We need to invest in the search of new treatments and also for people to know that there are primary immunodeficiencies, they often put them in the same bag: for us it was important to name our child's illness", explains Núria Tomàs. Although she stills suffers from the consequences of the transplant and her disease, the 22q11 deletion or DiGeorge syndrome, Martina has achieved this course to go to school. Thanks to Bufa la Bombolla, the PIDs will be a little less unknown. This year they have been shown at the Enderrock Prizes and the World Minority Illness Day, which also will take place in the next La Marató of TV3.

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