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Rare Diseases

How we work?

Rare diseases require a multidisciplinary approach as they generally affect more than one organ. Moreover, treatment is complex, not only at a pharmacological level, but also because of the need to take nutritional and rehabilitation aspects into account. That is why it is vital to integrate different specialities and services into the management of each case.

With this in mind, the Hospital de Sant Pau's Rare Diseases Programme centres on the creation of Functional Units, which enable the highest possible degree of transversality at organisational level, bringing together specialists from different services to focus on patients. This approach makes it possible to combine and share knowledge in the provision of care for each different rare disease.

Each Functional Unit has a coordinator to ensure that the approach operates smoothly. Moreover, in what is another key element in the programme, the Functional Units also include a nurse case manager. The nurse case manager not only ensures effective coordination between the different services, but also facilitates close connections between patients and the care team.

In short, multidisciplinary care is the cornerstone of the Rare Diseases Programme. In this, the Programme is aligned with the model proposed by the Catalan Health System: the Network of Clinical Expertise Units. Hospital de Sant Pau is strongly committed to this and other initiatives launched by different healthcare systems (CSUR, ERN) with the goal of improving care for patients with rare diseases.

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Telèfon: 646 92 11 50