NEWS
VORASIDENIB FOR TREATING TREATING ASTROCYTOMA OR OLIGODENDROGLIOMA WITH IDH MUTATIONS
GREAT NEWS REGARDING APPROVAL OF VORASIDENIB IN THE UK!
31st March 2026We are delighted to be able to report to you that NICE has announced today that vorasidenib has been approved by them for prescribing to low-grade glioma (LGG) grade 2 patients who have had surgery but no other treatments, within the NHS.Since 2023, Astro Brain Tumour Fund (ABTF) has been involved in campaigning for the drug to be made available to eligible patients. Whilst waiting for the drug to go through the regularity process we supported a family campaigning for an early access, named patient programme. We started a petition (which obtained nearly 13,000 signatures), engaged in lengthy correspondence, made strenuous representations to the suppliers of the drug and supported a patient who raised the matter at the APPG on brain tumours.After much campaigning, in April 2024 an early access, named patient programme opened in the UK, allowing some patients to access the drug. Thank you so much to all our supporters who helped us during that campaign. We also extend grateful thanks to all those MPs who, through their membership of the APPG , were unwavering in their support, including Daisy Cooper, Dame Siobhain McDonagh and John McDonald.Following regularity approval, ABTF, alongside other brain tumour charities, acted as “patient group expert”, making representations that were considered at two NICE committee meetings. We also nominated a “patient expert” who spoke eloquently and passionately of his experiences of living with an LGG.Our submissions were very powerful because patients and family members took the time to give us their stories. Everyone who took the trouble to do this played a significant part in the eventual approval and we would like to say a huge thank you to each of you!We are aware that a significant number of you (including some who submitted your stories) do not fit within the eligibility criteria of vorasidenib at present. We are hopeful that this will change in the future and ABTF will continue to do all we can to ensure more patients can gain access in the future
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