The diagnostic gap – an expert opinion

Abstract

Many individuals with rare diseases of different types experience gaps between symptoms, diagnosis and treatment when in need of care. This is known in patient groups but not always known in society. A common experience is that no one is knowledgeable about the rare disease so the patient must, at every visit to healthcare, describe the disease and its consequences, which is not easy if you are in need of care.

Keywords::

• education
• empowerment
• rare disease
• research