The Catalan Health Service, within the framework of the Development and implementation of the model of care for minority diseases in Catalonia, has designated Parc Taulí as an expert center of the Network of Clinical Expertise Units (XUEC) in Neuromuscular Diseases.
In Catalonia, care for minority diseases (MM) involves health professionals from different fields and combines a high degree of specialization and clinical expertise with the daily and close support of the affected people and their families.
This comprehensive, integrated and quality care focuses on the patient and their immediate environment, through a network of centers and services that work in a coordinated way to cover the health, educational and social needs of people with MM and their families.
Where is the attention paid?
This care is provided from two levels welfare:
- THEterritorial or community reference team at home, which includes the primary care team, the specialized care of the hospital and reference specialist centers in the territory, social action services and educational services.
- The highly specialized hospital teams, which are organized in networks of clinical expertise units (XUEC).
The XUECs are clinical services formed by a multidisciplinary team of professionals with a high level of knowledge and expertise. Each of these XUECs is specialized in a thematic group of diseases.
These two levels of care work together, and their coordination is the responsibility of hospital case managers, who also attend to and support affected people and their families.
The XUEC for the care of minority neuromuscular diseases integrates six units attached to the following hospitals:
- Brothers Trias and Guttmann
- Parc Taulí
- Saint John of God
- Sant Pau
- Vall d'Hebron
How can I access it?
If your doctor suspects that you suffer from a minority disease, he or she will refer you to the reference hospital according to your area of residence so that, together with the corresponding XUEC, they can make the diagnosis and draw up a comprehensive and individualized treatment plan to treat -the.
The disease will be monitored both by the Clinical Expertise Unit and by the territorial team closest to your home. Attention will need to be paid to the specific needs of each case, according to the diagnosis of the minority disease, the place of residence and the resource needs.
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- A hard tackle from Vanessa González to Sequero
Basic multidisciplinary team
- Cristina Fortià Palahi
- M. Luisa Viguera Martínez
- José M. Martínez Pérez
- M. Rosa Bella Cueto
- Cristina Jou
- Manel Luján Torné
- Xavier Pomares Amigo
- M. Mercedes Jódar Vicente
- Esther Granell Moreno
- Fernanda M. Caballero Gómez
- Begoña Molina Hervás
- Adoration Torres Sánchez
- Sponsorship of the Cobos Cerdera
- Mercè Pérez Chico
Complementary multidisciplinary team
- Laura Gillamon Torán
Orthopedic Surgery and Traumatology
- Carlos Bridges
- Rose Saumench
- Laia Casamitjana Espuña
- Xavier Calvet Calvo
- Neus Baena Díez
- M. Elena Ramila Herrero
- Esther Granell Moreno
- Josep Visa Nasarre
- Nuria Cañameras Viñas
- Carlos Galisteo Lencastre Vega
- Juan F. Delgado de la Poza
Coordinator of the UEC - Neuromuscular Diseases
M. Luisa Viguera Martínez
Neuromuscular diseases are chronic diseases which can manifest themselves from early childhood to adulthood and are characterized by the weakness and loss of muscle tissue, but they can associate with other symptoms, including fatigue, pain, numbness, blindness, difficulty swallowing, breathing difficulties, and heart disease. Most neuromuscular diseases are progressive and debilitating, leading to a reduction in lifespan and quality of life.
They can be ofgenetic origin (congenital myopathies, Duchenne muscular dystrophy, spinal muscular atrophy, etc.) or acquired (autoimmune like myasthenia gravis, infectious like polio or toxic like botulism).
Basically, a neuromuscular disease it affects some component of the motor unit:
- Muscle: muscular dystrophies (Duchenne muscular dystrophy), congenital myopathies, myotonias and metabolic diseases that move to muscle.
- Neuromuscular junction (where the nerve joins the muscle): myasthenia gravis, the most common.
- Nerve endings that leave the spinal cord along the spine.
- Peripheral nerve (in arms, legs, neck and face): There are genetic (eg Charcot-Marie-Tooth syndrome) and acquired (Guillain Barré syndrome) forms.
- Spinal motor neuron (nerve cells that control muscle action): Spinal muscular atrophy is the most common.
Many of the pathologies that make up neuromuscular diseases are considered rares due to its low prevalence and incidence.
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