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22/12/2022

The BCN PID Foundation sponsors the "I have PID. I am not alone" program for pediatric patients

Donació Barcelona PID

22/12/2022

The funds will be used to maintain the contract of the psychologist who monitors the emotional well-being of the children with primary immunodeficiencies.

The Barcelona Foundation for Primary Immunodeficiencies in Pediatrics (BCN PID Foundation) has made a donation of 30,000 euros to the research group on Infection in Immunocompromised Pediatric Patients at Vall d'Hebron Research Institute (VHIR), to give continuity to the "I have PID. I am not alone" program for pediatric patients with primary immunodeficiency (PID). The contract is linked to a grant from La Caixa Foundation.

Dr. Pere Soler-Palacín, head of the Infectious Pathology and Immunodeficiency Unit of Pediatrics at Vall d'Hebron University Hospital and head of the Infection in Immunocompromised Pediatric Patients group at VHIR, is the leader of the project. The initiative provides psychological and emotional support to children with PID and seeks to assess their quality of life and how they perceive the care they receive at Vall d'Hebron Children's Hospital.

Laura López, psychologist and coordinator of the project, explains that every year she receives heartfelt comments from patients and family members who express their gratitude for the service they have received. She adds that "you can see an improved quality of life thanks to a greater acceptance of the disease and better compliance with the treatments". The professionals who treat these children are pleased to work in a multidisciplinary format, emphasizing the importance of this holistic care throughout the disease process.

Ms. Carlota Villar, vice-president of the BCN-PID Foundation emphasizes that psychosocial care for children and family members is a fundamental part of the treatment: "Having access to this support has become key for families with PID to learn to live with these rare diseases".

The BCN-PID Foundation is an entity whose main objectives are the promotion of excellence in the knowledge, study and dissemination of primary immunodeficiencies and any complications of infectious origin that pediatric patients may have, as well as excellence in their holistic care to improve their quality of life. The foundation has collaborated with the Vall d'Hebron Barcelona Hospital Campus continuously since 2015.

 The initiative provides psychological and emotional support to children with PID

Related news

The results show that, in some patients with mutations in the X chromosome, the healthy gene is inactivated and the mutated gene manifests itself, which favors the onset of the disease.

The study, which is part of the European RECOMB project, is currently recruiting volunteers.

This clinical trial is part of the European project RBDCOV, led by HIPRA in which Vall d'Hebron participates, whose recruitment is still open.

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