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The visibility of cNF had a higher impact than their number.<\/jats:p>\n<jats:p>92% (<jats:italic>n<\/jats:italic>\u2009=\u2009156) of patients have a regular and multidisciplinary medical follow-up. The dermatologist is one of the most consulted healthcare professionals.<\/jats:p>\n<jats:p>76% (<jats:italic>n<\/jats:italic>\u2009=\u2009130) of respondents have treated their cNF: 65% (<jats:italic>n<\/jats:italic>\u2009=\u2009111) had surgery and 38% (<jats:italic>n<\/jats:italic>\u2009=\u200964) had multiple laser sessions. Frequency of operations and regrowth of cNF were the two most unsatisfactory aspects with both treatments for patients. Indeed, after removal, new cNF appear in more than 75% (<jats:italic>n<\/jats:italic>\u2009=\u2009128) of cases.<\/jats:p>\n<jats:p>As a future treatment, patients expected a topical (30%, <jats:italic>n<\/jats:italic>\u2009=\u200951) or oral medication (29%, <jats:italic>n<\/jats:italic>\u2009=\u200950). Around 2 out of 3 patients would agree to take it at least once a day or more for life but they would like a well-tolerated treatment.<\/jats:p>\n<jats:p>According to patients, the most important effectiveness criteria of a new treatment are to block cNF growth and reduce their number. 70% (<jats:italic>n<\/jats:italic>\u2009=\u2009119) of patients would consider a future treatment moderately effective to very effective if it could clear 30% of cNF.<\/jats:p>\n<\/jats:sec><jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>This first cNF European patient community survey confirmed that the visible stigma and unaesthetic aspect of cNF have an important impact on patients\u2019 quality of life. The survey highlighted that patients were not entirely satisfied with the actual surgery and laser treatments and revealed their clear and realistic expectations for future treatment of cNF.<\/jats:p>\n<\/jats:sec>","DOI":"10.1186\/s13023-019-1265-4","type":"journal-article","created":{"date-parts":[[2019,12,4]],"date-time":"2019-12-04T20:03:03Z","timestamp":1575489783000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":33,"title":["Cutaneous neurofibromas: patients\u2019 medical burden, current management and therapeutic expectations: results from an online European patient community survey"],"prefix":"10.1186","volume":"14","author":[{"given":"Marlene","family":"Guiraud","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Athmane","family":"Bouroubi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roxane","family":"Beauchamp","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arnaud","family":"Bocquet","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jean-Marc","family":"Gr\u00e9goire","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabelle","family":"Rauly-Lestienne","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ignacio","family":"Blanco","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pierre","family":"Wolkenstein","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne-Marie","family":"Schmitt","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2019,12,4]]},"reference":[{"key":"1265_CR1","doi-asserted-by":"publisher","unstructured":"Cannon A, Chen MJ, Liz P, Boyd KP, Theos A, Redden DT, et al. 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