The flare of care for rare: per aspera ad astra for rare lung diseases!

Rare lung diseases have been noticed for centuries: studies on a mummy of an Egyptian male from the 12th dynasty (1991–1783 BC) showed the presence of an interstitial lung disease called sand pneumoconiosis [1]. Rare disorders have a great impact on patients and their families, yet they are frequently misdiagnosed and undertreated [2]. This is caused, in part, by general as well as healthcare professionals’ lack of knowledge of these disorders. Additionally, because rare disorders are so uncommon, there is frequently a shortage of funding for studies into, and management of, these conditions. The understanding and treatment of rare diseases did not make substantial strides until the end of the 20th century. In 1997, the European Organization for Rare Diseases (EURORDIS) was established to advocate on behalf of patients with rare diseases and their families at the European level [3]. With the adoption of the Orphan Medicinal Products Regulation (following the United States’ Orphan Drug Act), a system of incentives for the development of orphan medications was established in the European Union (EU) in 2000.
Source: European Respiratory Review - Category: Respiratory Medicine Authors: Tags: Interstitial and orphan lung disease Editorials Source Type: research