The journey of gene therapy in haemophilia – putting the patient at the centre of the hub and spoke model
As gene therapy for haemophilia is now licensed in Europe, and the hub and spoke approach is widely promoted for its delivery and follow-up, it is essential that people with haemophilia (PwH) who are eligible and opt to have this treatment are enabled to obtain the maximum benefit. Ensuring the path...
| Published in: | The Journal of Haemophilia Practice |
|---|---|
| Main Authors: | Noone Declan, Astermark Jan, O'Mahony Brian, Peyvandi Flora, Khair Kate, Pembroke Luke, Jenner Kathryn |
| Format: | Article |
| Language: | English |
| Published: |
Sciendo
2023-01-01
|
| Subjects: | |
| Online Access: | https://doi.org/10.2478/jhp-2022-0021 |
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