{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T06:51:23Z","timestamp":1765176683309,"version":"3.46.0"},"reference-count":9,"publisher":"Wiley","issue":"23","license":[{"start":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T00:00:00Z","timestamp":1760054400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["febs.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["FEBS Letters"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:p>\n                    First described in the 19th century, Marfan syndrome is a rare hereditable genetic disease, mainly caused by mutations in\n                    <jats:italic>FBN1<\/jats:italic>\n                    leading to connective tissue defects. While the patient phenotype is highly variable, many affected present with tall stature, long and flexible limbs and joints, eye disorders, and life\u2010threatening aortic enlargements. Modern medical treatments can alleviate these symptoms, but it is important for people living with connective tissue disorders to learn about their situation and connect with others facing the same challenges. The Marfan Europe Network (M.E.N.) is an umbrella organization of 14 national Marfan patient organizations, integrating efforts to inform the public and improve the lives of those affected. Here, we interview Tuija Ekegren, Fran\u00e7oise Steinbach, and Margit Aschenbrenner from the Board of Directors of the M.E.N.\n                  <\/jats:p>","DOI":"10.1002\/1873-3468.70183","type":"journal-article","created":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T11:49:34Z","timestamp":1760096974000},"page":"3399-3403","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Marfan Europe Network: Together we can!"],"prefix":"10.1002","volume":"599","author":[{"given":"Margit","family":"Aschenbrenner","sequence":"first","affiliation":[{"name":"Marfan Europe Network"},{"name":"Marfan Initiative \u00d6sterreich  Vienna Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tuija","family":"Ekegren","sequence":"additional","affiliation":[{"name":"Marfan Europe Network"},{"name":"Marfan ja sen kaltaiset sairaudet ry  Finland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fran\u00e7oise","family":"Steinbach","sequence":"additional","affiliation":[{"name":"Marfan Europe Network"},{"name":"Association Marfans  Aulnay\u2010sous\u2010Bois France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7828-1269","authenticated-orcid":false,"given":"Julia","family":"Hansen","sequence":"additional","affiliation":[{"name":"FEBS Letters Editorial Office  Heidelberg Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,10,10]]},"reference":[{"key":"e_1_2_10_2_1","first-page":"220","article-title":"Un cas de d\u00e9formation cong\u00e9nitale des quatre membres plus prononc\u00e9e aux extr\u00e9mit\u00e9s, caract\u00e9ris\u00e9e par l'allongement des os avec un certain degr\u00e9 d'amincissement","volume":"13","author":"Marfan BJA","year":"1896","journal-title":"Bull Mem Soc Med Hop Paris"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev.med.51.1.481"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(05)67789-6"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/352337a0"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/0014-5793(92)80913-2"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.febslet.2014.06.061"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/0014-5793(93)80829-J"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-020-01633-4"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/14779072.2019.1704625"}],"container-title":["FEBS Letters"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/febs.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/1873-3468.70183","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,8]],"date-time":"2025-12-08T06:45:39Z","timestamp":1765176339000},"score":1,"resource":{"primary":{"URL":"https:\/\/febs.onlinelibrary.wiley.com\/doi\/10.1002\/1873-3468.70183"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,10,10]]},"references-count":9,"journal-issue":{"issue":"23","published-print":{"date-parts":[[2025,12]]}},"alternative-id":["10.1002\/1873-3468.70183"],"URL":"https:\/\/doi.org\/10.1002\/1873-3468.70183","archive":["Portico"],"relation":{},"ISSN":["0014-5793","1873-3468"],"issn-type":[{"type":"print","value":"0014-5793"},{"type":"electronic","value":"1873-3468"}],"subject":[],"published":{"date-parts":[[2025,10,10]]},"assertion":[{"value":"2025-09-18","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-09-24","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-10-10","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}