As part of the Global Health Initiative (GHI), SNF and Sant Joan de Déu (SJD) Barcelona Children’s Hospital have expanded their partnership through SNF support for SJD’s new ÚNICAS Center for Rare Pediatric Diseases, which aims to cater to the needs of affected children worldwide. This new grant follows SNF’s support for the creation of the SJD Pediatric Cancer Center in Barcelona, inaugurated in June 2022.
The majority of rare diseases, spanning more than 7,000 conditions which are progressive, chronic, and often disabling, first appear during childhood. These diseases, despite being called "rare," affect at least 300 million people globally, including 30 million in Europe and 3 million in Spain. Patients with rare diseases often struggle to receive an accurate diagnosis, and even after diagnosis, there is no specific treatment available for about 95% of these diseases. As a result, patients and their families often face high levels of health, social, and economic burden. The creation of the new ÚNICAS Center will ensure that pediatric patients and their families can access essential specialized care and support.
The work of the Center will focus on improving access to and quality of care; offering precision diagnosis and advanced therapies; providing comprehensive, personalized care through multidisciplinary teams including psychosocial support; and operating a telemedicine program to ensure that comprehensive and innovative care is provided to patients regardless of where they are. The new ÚNICAS Center will also facilitate critical research, including a data science program focused on rare pediatric diseases, with the aim of developing new treatments.
In the years to come, SNF’s grant to SJD will support the construction and outfitting of the new ÚNICAS Center for Rare Pediatric Diseases, which will bring together and expand existing departments at SJD in a new building located near the main hospital.
SJD has a long history of public service and providing comprehensive care to women, children, and adolescents, making it one of the leading specialized pediatric centers in Europe. SJD has already treated over 12,000 children with rare diseases and has experience with more than 1,200 types of rare diseases, establishing it as one of the top hospitals in Europe in this field.