Living with primary immunodeficiencies: the critical role of emotional support

Barcelona, April 27, 2026 – Living with a primary immunodeficiency involves challenges that go beyond diagnosis and medical treatment. The emotional impact of these conditions affects both patients and their closest support networks, making access to appropriate support resources essential. With the aim of providing professional psychological support, the Barcelona PID Foundation (BCN PID Foundation) and Vall d’Hebron Hospital in Barcelona, in collaboration with Grifols, launched the program “I’m an adult now. I have a PID and I’m not alone” five years ago.

Over the years, this multicenter initiative has expanded to other partner hospitals, where the care model has been successfully replicated. These include Bellvitge Hospital, Germans Trias i Pujol Hospital, and Hospital del Mar in Barcelona, as well as La Fe Hospital in Valencia.

On the occasion of World Primary Immunodeficiencies Week, held from April 22 to 29, the BCN PID Foundation has taken stock of the program’s performance. During this period, psychosocial support has been provided to more than 360 individuals, 70% of whom are patients’ family members, underscoring the emotional and psychological toll these conditions take on close support networks.

Primary immunodeficiencies (PIDs) are a group of genetic disorders characterized by quantitative or functional alterations in components of the immune system, predisposing patients to frequent and recurrent infections, as well as autoimmune or inflammatory conditions that, in some cases, can be life-threatening.

The project, launched following the success of a similar initiative aimed at children and adolescents, seeks to provide comprehensive emotional and social support not only to patients transitioning into adulthood, but also to their families and caregivers.

Carlota Villar, Vice President of the BCN PID Foundation and a family member of a patient with PID, stated that “from a psychological perspective, living with a PID can involve stress, anxiety, and uncertainty about how the disease will progress.”

This psychosocial care program is delivered online, a model that facilitates equitable access to psychological support and helps overcome barriers such as distance, mobility limitations, or frequent hospitalizations. According to Sonia Rodríguez, the program’s psychologist, “during sessions, the most common concerns expressed by patients and families are related to uncertainty about the future, fear of developing debilitating infections or serious complications, and the difficulty of maintaining a normal daily life given the demands of medical monitoring, treatments, and symptoms. These factors can lead to emotional challenges such as anxiety or isolation.”

Over the years, patients and families from across Spain have benefited from this initiative, which is also available to individuals temporarily residing abroad.

A highly positive outcome

Villar noted that “the program’s results have been very positive, with a high level of satisfaction among participants, who highlight the value of psychological support and improvements in their quality of life.” In addition, healthcare professionals involved in the initiative emphasize that coordinated work with the psychology team provides a better understanding of patients’ and families’ emotional situations, enabling more effective communication in both the content and timing of clinical information delivery.

Santi González, Vice President of International Corporate Affairs at Grifols, stated that “supporting initiatives that help improve people’s quality of life is part of our DNA. This program is undoubtedly an opportunity to address the management of PIDs in a holistic way, ensuring not only patients’ physical well-being but also their emotional well-being and that of their support networks, beyond the disease itself.”

In light of these results, the program’s promoters plan to continue expanding its reach to serve more patients and families, as well as to strengthen resources dedicated to psychological care. Four additional leading Spanish centers have expressed interest in joining the program.