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

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...

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Detalles Bibliográficos
Autores principales: Zorzi, Alessandro Rozim, Delai, Patricia R., Rosa, Henrique L. C., Brito, Wander E., Montalli, Victor A. M., Napimoga, Juliana C., Napimoga, Marcelo H., Nociti, Francisco H.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9450346/
https://www.ncbi.nlm.nih.gov/pubmed/36071499
http://dx.doi.org/10.1186/s13023-022-02503-6
Descripción
Sumario: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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