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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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
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author 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.
author_facet 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.
author_sort Zorzi, Alessandro Rozim
collection PubMed
description 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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spelling pubmed-94503462022-09-08 Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks 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. Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2022-09-07 /pmc/articles/PMC9450346/ /pubmed/36071499 http://dx.doi.org/10.1186/s13023-022-02503-6 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Letter to the Editor
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.
Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title_full Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title_fullStr Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title_full_unstemmed Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title_short Fibrodysplasia ossificans progressiva in Brazil: challenges and strategies to create assistance and educational networks
title_sort fibrodysplasia ossificans progressiva in brazil: challenges and strategies to create assistance and educational networks
topic Letter to the Editor
url 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
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