Presentation
In the framework of care for minority diseases (MM) defined through the CatSalut Instruction 12/2015, we present the Clinical Expertise Unit (UEC) of the Parc Taulí hospital which is part of the Network of 'UEC for the group of immune minority diseases in the systemic autoimmune area.
The Catalan Health Service, within the framework of the Development and implementation program of the care model for minority diseases in Catalonia, has designated Parc Taulí as an expert center of the Network of Clinical Expertise Units (XUEC) in immune minority diseases of the systemic autoimmune area.
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.
What is a Clinical Expertise Unit (UEC) in MM and what is the UEC Network (XUEC)?
The Clinical Expertise Units in MM are functional units integrated by hospitals in the health system of Catalonia with experience and knowledge in the care of MM designated by CatSalut. Its main function is to make the clinical diagnosis and the care plan of the person with a minority disease, which includes the therapeutic strategy and the follow-up strategy of the person affected by MM.
CatSalut has defined a UEC designation system (designation procedure) for each of the thematic groups of MM, following the grouping of the MM carried out by the European Commission (https://health.ec.europa.eu/european-reference-networks/networks_en).
For each MM Group more than one UEC can be designated constituting a Network of UECs that act as leaders for the network of health services for a certain thematic group of MM and facilitate the knowledge transfer process, of research and innovation and of accessibility to clinical protocols in regional reference hospitals and professionals in the specialized and primary care network.
Where is the Care provided?
This care is provided from two levels of assistance
The territorial or community reference team at home, which includes the primary care team, specialized care at the hospital and reference specialist centers in the territory, social action services and educational services .
The highly specialized teams of the hospitals, 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 UEC for immune minority diseases of the systemic autoimmune area of the Parc Taulí Hospital is part of the XUEC for this group of diseases, made up of the following hospitals: Hospital Sant Joan de Déu, Hospital Clínic de Barcelona, Hospital Universitari de Bellvitge, Vall d'Hebron University Hospital, Santa Creu i Sant Pau Hospital, Parc Taulí Hospital and Hospital del Mar.
For years at the hospital, we have experience in caring for this group of diseases and we have the diagnostic and therapeutic resources to address these pathologies in a coordinated manner with other resources of the health system. Thus, the multidisciplinary team has a functional plan that defines its operation and meets the criteria required for the XUEC, such as the protocol for the transition of pediatric patients to adult services.
The multidisciplinary team is made up of the set of medical and nursing services for diagnosis, treatment and follow-up of the patient, as well as the administrative and management services that will facilitate the procedures of the internal circuits of the center and external with the rest of the services close to the patient's environment.
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.
Links of interest
https://canalsalut.gencat.cat/ca/salut-a-z/m/malalties-minoritaries/
* Nothing on this website is intended to be used for diagnosis or medical treatment. While we carefully review our content, we cannot guarantee or take responsibility for the medical accuracy of all published documents, nor can we assume any responsibility for the content of websites linked from ours.
About us
Adults Area Manager
- Begoña Marí
Head of Pediatric Area
- Judith Sanchez
Case manager
- Anna Carreras
Multidisciplinary team
| Rheumatologist/ologist | Moreno Martínez-Losa, Mireia |
| Rheumatologist/ologist | Galisteo Lencastre de la Veiga, Carlos |
| Day hospital nurse | Fernandez Angulo, M. Luisa |
| Consultation nurse | Aymerich Mañas, Cristina |
| Pulmonologist/Ologist | Moreno Gómez de Bonilla, Amalia |
| Dermatologist/ologist | Fernandez Chico, Natalia |
| Nephrologist/ologist | Valenzuela Mujica, Maria Pau |
| Ophthalmologist/ologist | Montane Esteva, Daniel |
| Immunologist | Delgado de la Poza, Juan Francisco |
| Immunologist | Baucells de la Peña, Andrés |
| Immunologist | Julià Agulló, Germà |
| Pathologist/ologist | Vidal Borrego, Marta |
| Pathologist/ologist | Ferreres Piñas, Joan Carles |
| Neurologist/ologist | Hervas Pujol, Mariona |
| Case manager | Costa Ventura, Helena |
| Psychologist/ologist | Pujol Serra, Susana Maria |
| Social worker | Martos Martínez, Ascension |
| internist | Marí Alfonso, Begoña |
| internist | Feijoo Massó, Carlos |
| internist | Mercadé Torras, Joan Maria |
| Rehabilitation Team | Galindo Barrue, Maria |
| Radiologist/ologist | Pérez Riverola, Victor |
| Radiologist/ologist | Castañer González, Eva |
| Nutritionist | Casamitjana Espuña, Laia |
| Transplant coordinator | Guide Rambla, Consuelo |
| Coordinator of the child-adult transition | Sánchez Manubens, Judith |
| Cardiologist/ologist | Guillaumet Gasa, Eva |
| Genetic counseling | Capdevila Atienza, Núria |
| Digestologist/ologist | Calvet Calvo, Xavier |
| Endocrinologist/ologist | Capel Flores, Ismael |
| Gynecologist/Ologist | Costa Pueyo, Jorge |
| Hematologist/ologist | Gómez Nuñez, Marta |
| Vascular surgery | Santos Espi, Marta |
| Rheumatologist/ologist | Calvet Fontova, Joan |
| Rheumatologist/ologist | Garcia Cirera, Silvia |
| Pulmonologist/Ologist | Pomares Amigo, Javier |
| Neurologist/ologist | Espinosa Garcia, Jorge |
| Geneticist | Martinez Gonzalez, Victor Manuel |
| Neurologist/head of service | Ribera Perpiña, Gisela |
| Pulmonologist/head of service | Lujan Tone, Manel |
| Dermatologist/head of service | Sabat Santandreu, Mireia |
| Nephrologist/head of service | Admiral Daly, James |
| Cardiologist/head of service | Martinez Rubio, Antonio |
| Digestologist/ologist head of service | Vergara Gomez, Merce |
Coordinator of the Unit
Jordi Gratacós
Information for patients
Disease information
Systemic autoimmune diseases (EAS) are a group of very diverse pathologies that are characterized by a malfunction of the immune system in genetically predisposed people. In these cases the immune system acts in the wrong way against the individual's own cells and tissues. They can affect any organ and tissue including the vascular system; this is why its symptoms can be very varied, which in many cases justifies the need for comprehensive management and the coordination of several specialists. They usually present with general symptoms such as fever, general malaise and fatigue, which can be seen associated with symptoms specific to the tissue or organ affected (lung, liver, nervous system, etc.). On many occasions, the diagnosis and management of these patients is difficult given their diversity in clinical presentation and affected organs, which, together with their low population frequency, justifies the creation of Expertise Units that combine the efforts of several specialists with experience in these pathologies.
These are diseases of unknown cause, in which there is usually a little-known genetic predisposition and a totally unknown environmental trigger. They are chronic diseases that do not currently have a curative treatment in the vast majority of cases, but a symptomatic treatment that can greatly improve the quality of life of these patients.
Included in this group of diseases are: Lupus, scleroderma, Sjögreen syndrome, myositis, vasculitis among many others.
Many of the pathologies that make up systemic autoimmune diseases in adults and children are considered rare due to their low prevalence and incidence.
Patient and family associations
- ERDF - Spanish Federation of Rare Diseases
- FECAMM - Catalan Federation of Rare Diseases
- EURORDIS - European Federation of Rare Diseases
- Catalan Rheumatology League
- SAF Spain
- FELUPUS (Spanish Lupus Federation)
- ACLEG (Catalan Lupus Association)
- Spanish Behçet Association
- Spanish Association of Systemic Vasculitis
- AEE (Spanish Scleroderma Association)
- AUVEA (Uveitis Association)
- AESS (Spanish Association of Sjögren's Syndrome)
- ANES National Association of Patients with Sarcoidosis
Information for professionals
Shared resources
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Shared resources
Collection of documents, guides, templates, diagrams and protocols of interest for other devices in the healthcare system.
Functional circuits
- Flowchart of the Angelman Unit Clinical Practice Model
- Flow chart of the model of care for Rare Diseases
Clinical practice guidelines
Templates and model documents
Inquiries
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Consulting between professionals
For any type of information or management contact l'Liaison Office.
Research and dissemination of knowledge
Below is the link to the Areas and Research Groups of the Rare Diseases Unit: enllaç
We provide you with links to major databases so you can find out what clinical trials are currently being conducted and where they are being conducted.