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ISA 2024 | HRQoL, diagnosis and treatment experiences of patients with AL amyloidosis: a survey by MPE
Solène Clavreul, PhD, Myeloma Patients Europe, Brussels, Belgium, shares insights into the findings of an international survey conducted by Myeloma Patients Europe (MPE) which aimed to investigate the health-related quality of life (HRQoL) of patients with light chain (AL) amyloidosis, as well as their experiences with diagnosis and treatment. Patients who completed this survey shared important insights into the impact of disease diagnosis on their QoL, highlighting other challenges such as lack of information on clinical trials and limited access to psychological support. Patients also emphasized the physical limitations of this disease, which may further impact their professional life. Dr Clavreul explains important actions that should be followed, including the need to continue raising awareness around early diagnosis, and the value of establishing peer support programs and educational resources for patients. This interview took place at the XIX International Symposium on Amyloidosis (ISA) in Rochester, MN.
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Disclosures
No personal disclosures. MPE has received funding from the following sources in 2021 and 2022: AbbVie, Amgen, Alexion, BeiGene, Binding Site, Bristol Myers Squibb, GlaxoSmithKline, Janssen, Novartis, Oncopeptides, Pfizer, Regeneron, Roche, Sanofi, Menarini Stemline, Takeda, Sebia, Prothena, SkylineDx, Sandoz
