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Journals
The Journal of Haemophilia Practice
Volume 11 (2024): Issue 1 (January 2024)
Open Access
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
Brian O’Mahony
Brian O’Mahony
,
Simon Fletcher
Simon Fletcher
,
Manuel Baarslag
Manuel Baarslag
,
Kate Khair
Kate Khair
,
Daan Breederveld
Daan Breederveld
,
Nathalie Jansen
Nathalie Jansen
,
Luke Pembroke
Luke Pembroke
,
Karen Pinachyan
Karen Pinachyan
and
Sujan Sivasubramaniyam
Sujan Sivasubramaniyam
| Apr 18, 2024
The Journal of Haemophilia Practice
Volume 11 (2024): Issue 1 (January 2024)
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Article Category:
Clinical Practice
Published Online:
Apr 18, 2024
Page range:
47 - 57
DOI:
https://doi.org/10.2478/jhp-2024-0007
Keywords
Haemophilia
,
Gene therapy
,
Patient education
,
Shared decision-making
© 2024 Brian O’Mahony et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Brian O’Mahony
Irish Haemophilia Society
Dublin, Ireland
Simon Fletcher
Haemnet Ltd
London, UK
Manuel Baarslag
Radboud UMC
Nijmegen, The Netherlands
Kate Khair
Haemnet Ltd
London, UK
Daan Breederveld
Brendaan Consultancy
Amsterdam, The Netherlands
Nathalie Jansen
CSL Behring
Hattersheim am Main, Germany
Luke Pembroke
Haemnet Ltd
London, UK
Karen Pinachyan
CSL Behring
Hattersheim am Main, Germany
Sujan Sivasubramaniyam
CSL Behring
Hattersheim am Main, Germany