Rare diseases
Description
Treatment of rare diseases
The complexity of most rare diseases requires multidisciplinary care with professionals from different medical specialities, case management for nursing, psychological support and also social work.
Care at Vall d’Hebron Barcelona Hospital Campus
The Vall d'Hebron Barcelona Hospital Campus is home to more than 100 specialist professionals dedicated to the care of more than 2,000 rare diseases. Apart from treating the most rare diseases of any centre in Spain, it is one of the leading hospitals in Europe in this field. In fact, Vall d'Hebron is part of 10 European reference networks, known as ERN. This makes this hospital a highly specialised centre for rare diseases, from birth to adulthood, through a networked system that allows sharing of resources and knowledge with other world-class hospitals.
Vall d'Hebron is part of the following ERNs:
- Craniofacial anomalies and disorders of the ear, nose and throat (CRANIO)
- Paediatric cancer (oncohaematology) (paedcan)
- Endocrine conditions (ENDO)
- Haematological diseases (EuroBloodNet)
- Immunodeficiency, autoinflammatory and autoimmune diseases (RITA)
- Neuromuscular diseases (EURO-NMD)
- Neurological diseases (RND)
- Kidney disease (ERKNet)
- Respiratory diseases (LUNG)
- Hereditary metabolic disorders (MetabERN)
The importance of research
This concentration of patients with rare diseases at Vall d'Hebron improves knowledge and promotes research. Research in this field focuses above all on improving diagnostic capacity for diseases that are often difficult to diagnose and on developing new treatments for those diseases. In the case of diseases with few patients, publicly funded research is often the main avenue for the discovery of new drugs, and public health is the framework that provides the public with access to high medication complexity.
For more information, contact the Rare Disease Team at the following email address: minoritaries-VH@vhebron.net
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