Some disorders are so rare that it sometimes takes a long time to come to a correct diagnosis and to get adequate treatment going. Especially for congenital and family disorders or disorders that affect various organs, such as systemic diseases, metabolic diseases and immunodeficiencies, a diagnosis is often especially difficult because of diffuse, sometimes contradictory, symptoms.
Obviously it is not possible to bring all knowledge of all rare diseases to 1 team. The diagnostic and therapeutic knowledge required is so wide-ranging and deeply specialised that appropriate organisation is necessary. This is why, in terms of an organisational gateway, UZ Leuven makes a distinction between patients with symptoms and clinical presentations suggestive of pathology for 1 organ versus symptoms and clinical presentations that are not suggestive of 1 organ and thus present more non-specific complaints and (inconsistent) diagnostic results.
Patients can then be referred to one of the multidisciplinary teams or conventions on rare diseases