TY - JOUR T1 - The flare of care for rare: per aspera ad astra for rare lung diseases! JF - European Respiratory Review JO - EUROPEAN RESPIRATORY REVIEW DO - 10.1183/16000617.0006-2023 VL - 32 IS - 167 SP - 230006 AU - Marlies Wijsenbeek AU - Marc Humbert AU - Thomas Wagner AU - Michael Kreuter Y1 - 2023/03/31 UR - http://err.ersjournals.com/content/32/167/230006.abstract N2 - 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.For rare lung diseases cross border collaborations and joining forces, such as between ERN-LUNG and ERS as well as patient organisations, are crucial to improve diagnosis and management of these diseases. https://bit.ly/3HpqGX1 ER -