The Hospital Sant Joan de Déu Barcelona and the Amancio Ortega Foundation have signed a collaboration agreement to promote research into rare diseases. The signing took place at the hospital itself, in the presence of the president of the foundation, Flora Pérez Marcote, and the managing director of the Hospital, Manel del Castillo.
The Amancio Ortega Foundation will contribute nearly 60 million euros to the construction and equipping of an international pioneering centre for research and care of rare diseases, called "Únicas Sant Joan de Déu", which will be built on land next to the Hospital donated by the Esplugues de Llobregat Town Council.
With a surface area of almost 14,000 square metres and six floors, the centre will have the most advanced facilities for the research and treatment of rare diseases: various platforms for genetic, metabolic and radiological studies, as well as a multimodal child characterisation centre. It will also be able to offer new therapies such as gene and cell therapy or neuromodulation and deep brain stimulation.
Thanks to this centre, the Hospital Sant Joan de Déu will promote knowledge of rare diseases through research and the application of new therapies. 80% percent of cases of people with a rare disease (around three million in Spain) appear in the paediatric age. These patients spend an average of more than three years before they reach a specific diagnosis, and they need to travel from their own community to get it. This centre will allow children affected by these pathologies to be diagnosed earlier and to have access to new advanced therapies and innovative personalised treatments.
This centre will be part of the Únicas Network, a network made up of 30 hospitals throughout Spain and promoted by the Hospital Sant Joan de Déu and the Spanish Federation for Rare Diseases. The aim of this network is to promote the exchange of information and the sharing of knowledge in precision diagnosis and new therapies, thus benefiting all paediatric patients, regardless of where they live in Spain.
The Unicas SJD precision medicine centre project also counts with the collaboration of other entities. In addition to the Amancio Ortega Foundation, the Leo Messi Foundation and the Stavros Niarchos Foundation will make possible the development of other key platforms for the care of these patients, such as the Clinical Command Center, in its initial phase of operation, which offers telemedicine and remote monitoring services.
According to Manel del Castillo, managing director of the Hospital Sant Joan de Déu, "the contribution of the Amancio Ortega Foundation to set up this centre is an important step for families with children with rare diseases and also for the specialists who work with these pathologies. On behalf of all of them, thank you very much for helping us to make this qualitative and quantitative leap, both in the care and in the research of these diseases that are unique and increasingly less invisible".
Photo: the Amancio Ortega Foundation, represented by Flora Pérez, and the Hospital Sant Joan de Déu Barcelona, represented by Manel del Castillo, managing director of the centre
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