A multi-stakeholder collaborative approach to awareness, education and support needed in the haemophilia gene therapy patient journey – a report on insights from a European patient advisory board

A multi-stakeholder collaborative approach to awareness, education and support needed in the haemophilia gene therapy patient journey – a report on insights from a European patient advisory board

Gene therapy presents a potentially transformational approach to haemophilia management. The patient journey for gene therapy is unlike that for other haemophilia treatments, and its one-time, irreversible nature has led to broad agreement that informed shared decision-making is essential. Understan...

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Bibliographic Details
Main Authors: O’Mahony Brian, Fletcher Simon, Baarslag Manuel, Khair Kate, Breederveld Daan, Jansen Nathalie, Pembroke Luke, Pinachyan Karen, Sivasubramaniyam Sujan
Format: Article
Language:English
Published: Sciendo 2024-04-01
Series:The Journal of Haemophilia Practice
Subjects:
haemophilia
gene therapy
patient education
shared decision-making
Online Access:https://doi.org/10.2478/jhp-2024-0007
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