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Open Access 01-12-2022 | Fibrodysplasia Ossificans Progressiva | Letter to the Editor

Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks

Authors: Alessandro Rozim Zorzi, Patricia R. Delai, Henrique L. C. Rosa, Wander E. Brito, Victor A. M. Montalli, Juliana C. Napimoga, Marcelo H. Napimoga, Francisco H. Nociti Jr.

Published in: Orphanet Journal of Rare Diseases | Issue 1/2022

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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Title: Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
Authors: Alessandro Rozim Zorzi
Patricia R. Delai
Henrique L. C. Rosa
Wander E. Brito
Victor A. M. Montalli
Juliana C. Napimoga
Marcelo H. Napimoga
Francisco H. Nociti Jr.
Publication date: 01-12-2022
Publisher: BioMed Central
Keyword: Fibrodysplasia Ossificans Progressiva
Published in: Orphanet Journal of Rare Diseases / Issue 1/2022
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/s13023-022-02503-6

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Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks

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