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The impact of rare diseases on health related quality of life

  • At: 2018 FIP Congress in Glasgow (Scotland)
  • Type: Poster
  • By: ABBAS, Amar (University of Malta)
  • Co-author(s): Amar Abbas
    Janis Vella Szijj
    Anthony Serracino-Inglott
  • Abstract:


    Over 80% of Rare Diseases (RDs) are genetic and appear early in life, resulting in a 30% mortality in children diagnosed before their fifth birthday. RDs are chronic and result in a decreased Quality of life (QOL)


    A self-administered Health Related QOL Assessment tool was created, validated by seven experts, and published online.


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Last update 4 October 2019

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