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Parental perspectives on gene therapy for children with haemophilia: The Exigency study.

Kate KhairLisa SteadmanSteve ChaplinMichael HollandKathryn JennerSimon Fletcher
Published in: Haemophilia : the official journal of the World Federation of Hemophilia (2020)
A coherent, community-wide strategy for communicating information and news about gene therapy should now be provided for children and families living with haemophilia. This should come primarily from trusted haemophilia nursing teams, who can give tailored, age-appropriate, factual advice.
Keyphrases
  • gene therapy
  • young adults
  • mental health
  • healthcare
  • smoking cessation
  • quality improvement