NEWS
VORASIDENIB FOR TREATING TREATING ASTROCYTOMA OR OLIGODENDROGLIOMA WITH IDH MUTATIONS
UPDATE 21ST NOVEMBER 2025
SECOND COMMITTEE MEETING 20TH NOVEMBER 2025
The committee meeting was held on 20th November to further consider approval (or not) of vorasidenib within the NHS. Astro Brain Tumour Fund submitted a comprehensive document spelling out the advantages of the drug and also included patients/carers comments within the document as well as separately submitting all the ‘stories’ which were accumulated.
Shay attended the meeting once again as a patient expert and eloquently told of the challenges of living with an LGG and how much difference vorasidenib has made to his life and his family.
It’s now a case of waiting for the decision which we think won’t be until January.
Many thanks to everyone who took the trouble to write their life stories which we forwarded and also to others who wrote directly to NICE. We think these stories really hit home regarding the challenges of living with an LGG.
SUPPORT for all
Look here for listings which will apply equally to patients and carers, with many services also being available to other family members including children, grandparents and those not directly involved in day to day care but still very much affected by the low-grade brain tumour diagnosis.
Please join the Low Grade Support Group Facebook page. This is a closed group for low-grade patients and their families. Apply to join the group and you will be contacted by the administrator, Linda. Please make sure your Facebook/Messenger settings are such that you can receive a message from her.
Find out MoreFrom Small Beginnings ....
Astro Brain Tumour Fund was founded in April 2001 to focus purely on low-grade glioma brain tumours; specifically astrocytoma, oligodendroglioma and ependymoma.
Particularly:
To offer support to those whose lives are touched by this tumour type
To raise funds for research and support projects
To gather and share information
To raise awareness of the challenges of living with a low-grade Glioma brain tumour
Find out More