In this insightful vlogcast, Nona sits down with Dr Anna Godfrey from Addenbrooke’s Hospital, Cambridge, to discuss crucial updates for patients diagnosed with Essential Thrombocythaemia (ET) who are triple negative (no JAK2, CALR, or MPL mutations) or have rare genetic variants.
Key Topics Covered:
- Redefining Triple Negative ET: Understanding why clinicians are moving toward more descriptive terminology to better reflect individual diagnoses and lower risks of disease transformation
- RaMPVar registry: A brand-new UK collaborative project aimed at gathering data on rare MPN genetic variants to improve diagnostic accuracy and care pathways
- Patient Involvement: How the MPN community can help shape future priorities for the registry
We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk. If you have any suggestions for future conversations please let us know.
We would like to thank Dr Godfrey for taking part in the vlogcast with Nona.
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