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Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational
Alessandro Rozim Zorzi1, Patricia R Delai2, Henrique L C Rosa3
1Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil. alessandro.zorzi@slmandic.edu.br.
Abstract:
Fibrodysplasia ossificans progressiva (FOP) is an ultrarare condition and one of the most impactful disorders associated with progressive heterotopic ossification events. It is estimated that there are 120-150 patients in Brazil; however, currently, fewer than 100 patients have been identified, and the role of a FOP advocacy group (FOP Brazil) has been instrumental for the identification and follow-up of these individuals and families. The aim of this article is to summarize the current status of FOP in Brazil and describe strategies proposed to approach this challenge in a continental size country.
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