The SJD Barcelona Children's Hospital and the Amancio Ortega Foundation are working together to create a one-of-a-kind research centre for rare diseases

The SJD Barcelona Children's Hospital and the Amancio Ortega Foundation have signed a collaboration agreement to promote research into rare diseases. The signing event was celebrated in the hospital itself, with guests including the Foundation's President, Flora Pérez Marcote, and the Managing Director of SJD, Manel del Castillo.

The Amancio Ortega Foundation will contribute almost 60 million euros to the construction and kitting out of the pioneering research and healthcare facility for rare diseases, named ‘Sant Joan de Déu Únicas’. It will be built on land near the hospital that was given over by the Esplugues de Llobregat Government.

Spanning almost 14,000 metres squared and reaching six floors in height, this facility will have the most advanced technological offering in the field of research and healthcare of rare diseases: several genomic, metabolic and radiomic screening platforms, as well as a pediatric multimodal characterisation centre. It will also offer new therapeutic options, from gene or cell therapy to neuromodulation and deep brain stimulation.

Thanks to this new facility, the SJD Barcelona Children's Hospital will be able to expand knowledge of rare diseases through investigation and trialling new therapies. In 80% of cases where a person has a rare disease (around three million in Spain), the disease manifests in childhood. These patients spend an average of over three years before they get a specific diagnosis, needing to frequently travel from their local communities to get it. This facility will allow young people with rare diseases to be diagnosed earlier and gain access to the most cutting-edge, innovative treatments available, personalised to them. 

This facility will belong to the Únicas Network, a network of 30 hospitals across Spain launched by SJD and the Spanish Federation for Rare Diseases (FEDER). The aim of this network is to promote the exchange of information and sharing of knowledge in precision diagnostics and new therapeutic options, thereby benefitting all pediatric patients, regardless of where in Spain they live.
 

The SJD Barcelona Children's Hospital is an international reference centre for complex pediatric healthcare, having made giant leaps in the field of rare pediatric diseases in the last decade. Its collaboration with public administrations and the continued charitable support it receives, such as the ‘La Caixa’ Foundation and the Daniel Bravo Andreu Foundation, have allowed SJD to launch several research initiatives aimed at patients with rare diseases.

The SJD Únicas project, a facility for precision medicine, also counts on the support from other entities. As well as the Amancio Ortega Foundation, support from the Leo Messi Foundation and the Stavros Niarchos Foundation make other key resources in caring for these young patients possible. For example, the Clinical Command Centre, which is in its initial stages of operation, is a centre that offers telemedicine and remote monitoring services to patients.

According to Manel del Castillo, Managing Director of the SJD Barcelona Children's Hospital, ‘the contribution from the Amancio Ortega Foundation to help us launch this centre is a significant step for families of children with a rare disease, and also for the specialist staff working with these diseases. On their behalf, thank you for helping us make this leap forward, on a qualitative and quantitative level: both in providing healthcare for patients with rare diseases, which are increasingly overlooked, and research into them.’

The Amancio Ortega Foundation finances projects for education and social wellbeing by collaborating with institutions that specialise in the care of vulnerable people and groups. In recent years, it has helped action several collaboration agreements, such as the Neurological Rehabilitation centre with the NIPACE in Guadalajara, the Comprehensive Pediatric Palliative Care Centre with the Porqueviven Foundation and, in the field of rare diseases, an agreement with the Spanish Federation for Rare Diseases (FEDER) to support research, diagnosis and the use of advanced therapies on patients.