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Original Research
The impact of fibrodysplasia ossificans progressiva (FOP) on patients and their family members: results from an international burden of illness survey
Mona Al Mukaddama Departments of Orthopaedic Surgery and Medicine, The Center for Research in FOP and Related Disorders, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USACorrespondence[email protected]
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Katherine S. Todera Departments of Orthopaedic Surgery and Medicine, The Center for Research in FOP and Related Disorders, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USAView further author information
, Michelle Davisb International FOP Association, Kansas City, MO, USAView further author information
, Amanda Calic The Radiant Hope Foundation, Mountain Lakes, NJ, USA;d The Ian Cali FOP Research Fund, PENN Medicine, The Center for Research in FOP and Related Disorders, Philadelphia, PA, USA;e Tin Soldiers: Global Patient Identification Program, Johannesburg, South AfricaView further author information
, Moira Liljesthrömf Fundación FOP, Buenos Aires, Argentina;g Argentine Representative to the International President’s Council of the International FOP Association, Buenos Aires, ArgentinaView further author information
, Suzanne Hollywoodb International FOP Association, Kansas City, MO, USAView further author information
, Kim Croskeryh Ipsen, Slough, UKView further author information
, Anne-Sophie Grandoulieri Ipsen, Paris, FranceView further author information
, Elaine A. Böingj Ipsen, Cambridge, MA, USAView further author information
, John D. Whalenh Ipsen, Slough, UKView further author information
& Frederick S. Kaplana Departments of Orthopaedic Surgery and Medicine, The Center for Research in FOP and Related Disorders, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USAView further author information
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Pages 1199-1213
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Received 20 Jul 2022, Accepted 17 Aug 2022, Published online: 21 Sep 2022
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