Orphanet Journal of Rare Diseases (Sep 2022)

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

  • 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

DOI
https://doi.org/10.1186/s13023-022-02503-6
Journal volume & issue
Vol. 17, no. 1
pp. 1 – 4

Abstract

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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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