Catalan health service opens two new clinical expertise networks for rare diseases
Units from different hospitals will coordinate to focus on neuromuscular disorders and primary immunodeficiencies
With Rare Disease Day on Saturday, the Catalan health service has designated two new clinical expertise unit networks, known as XUEC, to help provide coordinated expert medical care and attention for people suffering from certain rare diseases.
One of the new networks will be dedicated to neuromuscular disorders, and will be composed of units from the Sant Joan de Déu, Vall d’Hebron, Sant Pau, Bellvitge, Germans Trias i Pujol, and Parc Taulí hospitals.
The other network will deal with primary immunodeficiencies (disorders in which part of the body's immune system is missing or does not function normally), bringing together units from the Sant Joan de Déu, Clínic, Vall d'Hebron, and Bellvitge hospitals.
Neuromuscular disorders are chronic illnesses that can appear from early childhood into adulthood and are characterized by a weakening and loss of muscle tissue with such associated symptoms as fatigue, blindness, breathing difficulties, and heart problems.
As for primary immunodeficiencies, they are a group of genetic disorders that impair the body's immune system, making sufferers more prone to serious infections, as well as persistent or recurring infections, autoinflammatory disorders, and tumors.
The two new networks mean that Catalonia will now have five XUEC dealing with rare diseases. The existing three are dedicated to congenital disorders in children, to inherited metabolic disorders, and to kidney diseases.
The pioneering XUEC networks diagnose, plan and monitor the care of patients with rare diseases, and the health service plans to open two more by the end of the year, one for autoinflammatory diseases, and one for systemic autoimmune diseases.