The ongoing collaboration between Vall d'Hebron and the Barcelona PID Foundation improves the quality of life of patients with primary immunodeficiencies

The Vall d'Hebron University Hospital cares for 1,300 people diagnosed with primary immunodeficiencies (PID). Primary immunodeficiencies are genetic diseases, typically hereditary, which are characterised by an inappropriate response of the immune system to external or internal agents. As a result, people with primary immunodeficiencies often have a higher risk of suffering severe and recurrent infections, autoimmune disorders, allergies and certain types of cancer.

There are more than 500 primary immunodeficiencies. While some are not very serious, others can be fatal if they are not diagnosed and treated properly. These are rare diseases that require highly specialised care provided by multidisciplinary teams with a high degree of knowledge and expertise, such as those who work at Vall d'Hebron.

The Barcelona PID Foundation was set up ten years ago with the aim of promoting knowledge and research into these diseases, as well as providing support for the comprehensive care of children with primary immunodeficiencies and their families and carers. The foundation was established by a group of professionals working at the hospital and family members of affected patients.

Thanks to this joint effort, Vall d'Hebron has a new multi-purpose paediatric day hospital and an advanced research laboratory for primary immunodeficiencies. Dr Pere Soler, head of the Paediatric Infectious Pathology and Immunodeficiencies Unit and the Infection and Immunity in Paediatric Patients research group at VHIR, stated that these new facilities “have made it possible for Vall d'Hebron to improve the quality of the outpatient care that we offer our patients and to bring about a paradigm shift in the research of these diseases.”

The ‘No estic sol’ project

The joint work between Vall d'Hebron and the Barcelona PID Foundation has also enabled the launch of the ‘I have PID. I am not alone’ projects for paediatric and adult patients. These projects provide expert psychological support to people with primary immunodeficiencies and their close relatives in a suitable setting and with the best available material, with a view to achieving better clinical results and improving their quality of life. They also provide special care for the parents of infants diagnosed through neonatal screening who will require a transplant of haematopoietic precursor cells.

Carlota Villar, co-founder of the Barcelona PID Foundation together with Dr Pere Soler and mother of a child with primary immunodeficiencies, stressed that “the role of the Foundation over the last ten years has been to create synergies between health professionals, research teams, pharmaceutical companies and patients in order to offer excellent care to patients and their families, and to reinforce research into these rare diseases. The Foundation has grown exponentially and we hope to maintain this growth in the coming years.”

Villar added that “the ‘I'm not alone’ project provides a space where patients and their families can learn to live with these diseases. As the mother of a child with a rare disease, I have seen how my son has learned to understand his illness over the years and not view it as something negative. The psychosocial support serves to empower the patient and helps them to manage their emotions throughout the duration of the illness.”

With the leadership of Vall d'Hebron, the ‘I'm not alone’ project for adult patients has been extended to four other centres: Hospital Germans Trias i Pujol, Hospital del Mar, Hospital de Bellvitge and the Hospital La Fe de València.

To celebrate these 10 years of activity, the Barcelona PID Foundation has organised an event at CosmoCaixa to look back on its achievements over the last decade. During the event, representatives will thank institutions, companies, organisations and patients for their continued support and also discuss how they can address future challenges together.