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To explore adolescents\u2019 perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were \u201cdifficulties in keeping up with peers\u201d and \u201cbeing and feeling different from peers\u201d. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships\/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem\/image, knowledge about Marfan syndrome, support from family\/friends\/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.<\/jats:p>\n<jats:p><jats:italic>Conclusion<\/jats:italic>: Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome.<jats:table-wrap><jats:table><jats:tbody><jats:tr><jats:td colspan=\"2\"><jats:bold>What is known:<\/jats:bold><jats:italic>\u2022 Marfan syndrome is a hereditary connective tissue disorder.<\/jats:italic><jats:italic>\u2022 Marfan syndrome affects multiple systems.<\/jats:italic><\/jats:td><\/jats:tr><jats:tr><jats:td colspan=\"2\"><jats:bold>What is new:<\/jats:bold><jats:italic>\u2022 Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships\/relationships and work (2) to differ from peers due to their appearance and disability.<\/jats:italic><jats:italic>\u2022 An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.<\/jats:italic><\/jats:td><\/jats:tr><\/jats:tbody><\/jats:table><\/jats:table-wrap><\/jats:p>","DOI":"10.1007\/s00431-019-03469-7","type":"journal-article","created":{"date-parts":[[2019,10,16]],"date-time":"2019-10-16T10:46:44Z","timestamp":1571222804000},"page":"1883-1892","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":22,"title":["Marfan syndrome in adolescence: adolescents\u2019 perspectives on (physical) functioning, disability, contextual factors and support needs"],"prefix":"10.1007","volume":"178","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7597-3443","authenticated-orcid":false,"given":"Jessica","family":"Warnink-Kavelaars","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anita","family":"Beelen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tine M. 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