Rare respiratory diseases are ready for primetime: from Rare Disease Day to the European Reference Networks

Rare diseases are life-threatening or chronically debilitating conditions which are of such low prevalence (fewer than 1 in 2000 people) that special combined efforts are needed to address them [1]. Launched in 2008 by Rare Diseases Europe (EURORDIS), a non-governmental patient-driven alliance representing 733 rare disease patient organisations in 64 countries, Rare Disease Day (figure 1) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives [2]. In 2017, Rare Disease Day will emphasise that research brings hope to people living with a rare disease [2]. Indeed, due to the rarity and diversity of rare diseases, research needs to be international to ensure that experts, researchers and clinicians are connected, that clinical trials are multinational, and that patients can benefit from the pooling of resources across borders [2]. The ERN-LUNG network is currently made up of 60 centres in 12 countries and is focused on rare respiratory diseases http://ow.ly/CG0d3089xDC