February 28, 2021
Today is World Rare Disease Day and we would like to acknowledge the recent therapeutic advances that have brought hope to many patients and their families. Thank you to all who work in this field! Our team has a special interest in rare diseases; stemming both from the experience of two medical writers from our medical communication agency (Emma Pilling and Françoise Nourrit-Poirette) at Orphanet, and from our coverage of the North American Cystic Fibrosis Conference (NACFC). Marielle Romet, who is based in the United States, has attended the NACFC 4 years in a row and our team has coordinated the production of conference reports that were published live by the Pediatric Archives in partnership with the French Cystic Fibrosis Society, Elsevier and Vertex, and with the help of Profs. Isabelle Sermet, Isabelle Fajac, and Philippe Reix, and Drs. Valérie Urbach and Nadine Desmazes-Dufeu, and a group of French pulmonologists.