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European lipodystrophy registry: background and structure

von Schnurbein, Julia; Adams, Claire; Akinci, Baris; Ceccarini, Giovanni; D’Apice, Maria Rosaria; Gambineri, Alessandra; Hennekam, Raoul C. M.

Background: Lipodystrophy syndromes comprise a group of extremely rare and heterogeneous diseases characterized by a selective loss of adipose tissue in the absence of nutritional deprivation or catabolic state. Because of the rarity of each lipodystrophy subform, research in this area is difficult and international co-operation mandatory. Therefore, in 2016, the European Consortium of Lipodystrophies (ECLip) d...


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