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
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)
MethodsA self-administered Health Related QOL Assessment tool was created, validated by seven experts, and published online... The access to the whole abstract and the presentation file is available to FIP members and to congress participants of that specific congress.