Gene therapy in haemophilia represents a treatment paradigm shift, with many patients having experienced it within the framework of clinical trials. Sharing personal experiences can offer valuable insights for patients and caregivers, fostering a deeper understanding of the treatment process both emotionally and physically. Luke Pembroke, a person living with haemophilia, shares his journey of participating in a gene therapy clinical trial, navigating additional challenges posed by the COVID-19 pandemic. Follow the link to watch Luke's YouTube video here, where he shares more about his unique experience and journey towards gene therapy.
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This European website, initiated and developed by CSL Behring, has two separate sections with the aim to provide information on haemophilia for an international audience, either to European healthcare professionals or to the general public.*
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PATIENT EXPERIENCE
GENE THERAPY FOR HAEMOPHILIA: THE PATIENT PERSPECTIVE
Capturing a patient’s experience with gene therapy treatment within a clinical trial
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The World Federation of Hemophilia (WFH) Shared Decision Making (SDM) Tool for haemophilia treatment is designed to facilitate discussions between people with haemophilia and their healthcare team.
WFH: Shared Decision Making Tool
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PODCASTS DISCUSSING RARE BLEEDING DISORDERS
Did you know there are many podcasts discussing bleeding disorders? Here we highlight three of the most engaging series: Haemcast, New Horizon Talks and the European Haemophilia Consortium