A new era in child health
The care for children with rare diseases is about to undergo a radical change in Spain. Starting next year, hospitals in Madrid will join an innovative Unique Network, designed to provide specialised diagnosis and treatment without families having to travel far from home. This ambitious project, driven by the Ministry of Health and co-led by the Community of Madrid and Catalonia, aims to connect 30 hospitals across the country.
The Unique Network will allow medical professionals to share vital information about patients with uncommon diseases. With this digital platform, any child will be able to receive swift and efficient medical care, regardless of where they live. According to the Digitalisation Councillor, Miguel López-Valverde, “the initiative will unify clinical information in a single digital space, thus facilitating access to specialised treatments.”
Through this system, paediatricians will be able to confirm diagnoses and coordinate treatments without parents needing to travel to other municipalities. If a child presents symptoms related to atypical neuromuscular disorders or similar conditions, their doctor will be able to send the medical record to a specialist via teleconsultation. This not only speeds up the diagnostic process but also improves the patient's quality of life.
The official launch is scheduled for June 2026; however, it is anticipated that Madrid hospitals will begin to connect after the summer. Initially, the network will focus on four specific types of diseases: syndromic neurodevelopmental disorders, neuromuscular disorders, mitochondrial diseases, and epileptic encephalopathies.
This project has significant investment from European funds, reaching a total of 1.6 million euros. The first phase will focus on establishing this network to meet the paediatric needs related to rare diseases. Subsequently, there are plans to integrate advanced technologies such as artificial intelligence to further optimise care processes.
As this network begins to operate fully, it is expected to transform not only how these rare pathologies are diagnosed and treated but also how families perceive the healthcare system. “We want to promote a care model where data travels and not patients,” Valverde emphasised. This vision promises to significantly reduce stress for both patients and their families by eliminating the need for unnecessary travel.
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