SJD Barcelona Children’s Hospital and FEDER sign a collaboration agreement that guarantees the realisation of the Únicas Network
With this alliance, the two entities want to promote greater collaboration for the development of care for rare diseases.
The SJD Barcelona Children’s Hospital and the Spanish Federation of Diseases (FEDER) have signed a collaboration agreement that promotes knowledge, coordination between both entities and the exchange of experiences through the realisation, among other initiatives, of the Únicas Network and the Share4Rare project.
This collaboration agreement between the SJD Barcelona Children’s Hospital and FEDER seeks to create a data ecosystem where each national or European hospital can share the information it deems appropriate to generate knowledge that allows moving towards personalised prediction and prevention models. Another purpose of this initiative is to empower patients to actively participate in sharing information.
The agreement also contemplates collaboration with other projects linked to the SJD Barcelona Children’s Hospital such as Escola de Salut (School of Health), aimed at the empowerment of the patient community, as well as the self-care of individuals with rare diseases and their families.
The entities were represented at the signing ceremony by Manel del Castillo, Chief Executive Officer of the SJD Barcelona Children’s Hospital, and Juan Carrión, president of FEDER and his own foundation. Fide Mirón, vice-president of FEDER, and Jordi Cruz, patron of the FEDER Foundation also attended the signing ceremony.
This agreement is one more step in the already long tradition of collaboration between the SJD Barcelona Children’s Hospital and FEDER. The two entities have been working together for years on the care for rare diseases.
Sharing knowledge is the key to the alliance with FEDER
The Únicas Network, of which the SJD Barcelona Children’s Hospital is the driving force, comprises 25 hospitals throughout the country. It seeks to improve care for girls and boys with rare diseases or those seeking a diagnosis. These hospitals want to guarantee multidisciplinary care, techniques for a more precise diagnosis, and equal access to advanced therapies and telemedicine.
This philosophy makes it a pioneering project in the care of pediatric patients and it also stands out for its innovative work between healthcare professionals and patients. The Únicas Network also promotes the collaboration of Sant Joan de Déu and the other entities that make up the network with other European hospitals and universities, research centres, pharmaceutical companies, healthcare technology companies and associations.
This collaboration proposal between the hospital and FEDER also includes the Share4Rare project, one of the main pillars of the Únicas Network. Its objective is to promote social research to intensify the knowledge of rare diseases and promote the scientific dissemination of these pathologies.
It is worth remembering that around 70% of rare diseases are genetic in nature and appear in childhood. Therefore, an early diagnosis allows for more effective treatment.