Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks-Reference-Cited by-同舟云学术

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

Published:2022-09-07 Issue:1 Volume:17 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

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

Abstract

AbstractFibrodysplasia 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.

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Link

https://link.springer.com/content/pdf/10.1186/s13023-022-02503-6.pdf

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