TY - JOUR T1 - The time is right for an international primary ciliary dyskinesia disease registry JF - European Respiratory Journal JO - Eur Respir J DO - 10.1183/13993003.02143-2016 VL - 49 IS - 1 SP - 1602143 AU - Kenan Haver Y1 - 2017/01/01 UR - http://erj.ersjournals.com/content/49/1/1602143.abstract N2 - Rare diseases present diagnostic and management challenges to patients, healthcare providers and researchers. These diseases are often inherited, typically diagnosed upon presentation during childhood and can have deleterious long-term effects on patient wellbeing [1]. According to the regulatory and policy definition, a rare disease is any condition or disease affecting <200 000 individuals in the USA or in the European Union determined to be of low prevalence (fewer than five affected individuals per 10 000) [2]. With >7000 rare diseases estimated to affect ∼25 million people in North America and 30 million people in Europe [3, 4], even large medical centres are unlikely to have garnered sufficient patient care experience to accurately identify and effectively manage patients with these rare disorders.Diagnostic consensus is a crucial first step toward better understanding of PCD http://ow.ly/vp8j306eL8z ER -