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Van Groenendael, Stephanie, Giacovazzi, Luca, Davison, Fabian, Holtkemper, Oliver, Huang, Zexin, Wang, Qiaoying, Parkinson, Kay, Barrett, Timothy and Geberhiwot, Tarekegn (2015) High quality, patient centred andcoordinated care for Alstrom syndrome: amodel of care for an ultra-rare disease. Orphanet Journal of Rare Diseases, 10 (149). ISSN 1750-1172