Orphan diseases neglected: The faith of intestinal failure

Costs of healthcare are high and an important topic of debate in many countries, necessitating careful evaluation of future governmental spending. Patients with rare diseases, so called orphan diseases, are often severely ill, depending on expensive medical care. It is generally agreed upon that they benefit from centralised treatment. At present, Dutch healthcare regulations and reimbursement fail to cover the costs of this specific patient population and it can be expected that this becomes more difficult during the current financial crisis. Consequently, it blocks the establishment of centres of expertise. When patients with an orphan disease will not be fully recognised, erroneous decisions will lead to poor patient outcome and loss of clinical expertise. Therefore, it is imperative to keep the debate alive and this subject on the political agenda preventing orphan diseases from becoming a neglected disease again.