Extract
Rare diseases have such a low prevalence that a special organisation of the patient care pathway is required to address them. In France, the implementation of specific Cystic Fibrosis (CF) centres [1] has improved the care pathway of CF patients. Indeed, early diagnosis and progress in usual routine treatment might have contributed to improve the prognosis of CF [2]. In the light of this success, rare respiratory diseases reference centres (CRMR: “centre de Références des Maladies Respiratoires Rares” in French) were created from 2007 under the framework of the national plan for rare diseases. The ENT, pneumology and paediatrics departments at our centre have a long-standing expertise in the diagnosis and treatment of primary ciliary dyskinesia (PCD) [3, 4]. A reference centre for rare respiratory diseases (CRMR-RESPIRARE-Site Créteil) was accredited in 2017.
Footnotes
This manuscript has recently been accepted for publication in the European Respiratory Journal. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article.
Conflict of interest: the authors declare they have no conflicts of interest regarding this paper
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