Your browser doesn't support javascript.
loading
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.
Afiliação
  • Zorzi AR; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil. alessandro.zorzi@slmandic.edu.br.
  • Delai PR; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil.
  • Rosa HLC; Faculdade São Leopoldo Mandic Medical School, Undergraduate Medical Program, Campinas, SP, Brazil.
  • Brito WE; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil.
  • Montalli VAM; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil.
  • Napimoga JC; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil.
  • Napimoga MH; Faculdade São Leopoldo Mandic, Instituto São Leopoldo Mandic, Laboratory of the Neuroimmune Interface in Pain Research, Campinas, SP, Brazil.
  • Nociti FH; Center of Rare Diseases at Faculdade São Leopoldo Mandic (DoRa), R José Rocha Junqueira, 13, Campinas, SP, 13045-755, Brazil.
Orphanet J Rare Dis ; 17(1): 348, 2022 09 07.
Article em En | MEDLINE | ID: mdl-36071499
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.
Assuntos
Palavras-chave
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Ossificação Heterotópica / Miosite Ossificante Limite: Humans País/Região como assunto: America do sul / Brasil Idioma: En Ano de publicação: 2022 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Ossificação Heterotópica / Miosite Ossificante Limite: Humans País/Região como assunto: America do sul / Brasil Idioma: En Ano de publicação: 2022 Tipo de documento: Article