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Current challenges and opportunities in the care of patients with fibrodysplasia ossificans progressiva (FOP): an international, multi-stakeholder perspective.

Robert J PignoloChristopher Bedford-GayAmanda CaliMichelle DavisPatricia L R DelaiKristi GonzalesCandace HixsonAlastair KentHope NewportManuel RobertChristiaan ScottFrederick S Kaplan
Published in: Orphanet journal of rare diseases (2022)
This multi-stakeholder perspective highlights some of the unmet needs of individuals with FOP and their families. Regional and international organizations play an important role in improving the quality of life of those they reach in the global FOP community. However, globally, fundamental issues remain around raising awareness of FOP among healthcare professionals, identifying individuals with FOP, reducing time to diagnosis, and ensuring access to best practice in care, support, and clinical research. Medical writing support was industry-sponsored.
Keyphrases
  • healthcare
  • quality improvement
  • palliative care
  • primary care
  • mental health
  • pain management
  • affordable care act
  • chronic pain