Welcome to Astro Brain Tumour Fund

 

ASTRO BRAIN TUMOUR FUND IS THE ONLY UK CHARITY TO FOCUS PURELY ON LOW-GRADE GLIOMA (ASTROCYTOMA, OLIGODENDROGLIOMA AND EPENDYMOMA GRADES 1 AND 2) BRAIN TUMOURS

We are working to find a cure for low-grade astrocytoma, oligodendroglioma and ependymoma brain tumours by raising money to support low-grade glioma (LGG) research projects at the most innovative neuro-oncology research centres in the UK.

We also offer information, inspiration and support to help patients, carers, friends and relatives through the challenges of living with an LGG. Our online Facebook support group includes over 600 LGG patients and carers from all over the world, and is renowned for its welcoming, encouraging and well informed members who can expand upon all the information contained in this website.

Staffed entirely by volunteers, Astro Brain Tumour Fund will ensure that every penny you donate goes to where it is needed most. We have no overheads, no salaries and no expense accounts to pay. With all team members having personal experience of this challenging tumour type, finding a cure is at the centre of everything that we do.

We hope that you draw strength from the knowledge that the trustees of the charity is working hard to offer real hope for all of us whose lives are touched by low-grade gliomas. This website aims to bring together key information related to the low-grade glioma community in the UK, whilst information related to the global community can be gained through our Facebook closed low grade glioma support group.

 

 

 

 

 

 

 

More About Us

NEWS

URGENT - PLEASE HELP!

VORASIDENIB FOR TREATING TREATING ASTROCYTOMA OR OLIGODENDROGLIOMA WITH IDH MUTATIONS

UPDATE 29TH OCTOBER 2025

NICE DRAFT GUIDANCE CONSULTATION

COMMITTEE MEETING 18TH SEPTEMBER 2025

 

Read about the INDIGO trial courtesy of BNOS here https://www.bnos.org.uk/wp-content/uploads/2025/06/Vora-in-LGG_FINAL-June-2025.pdf

 

You will be aware that NICE at the above mentioned committee meeting, did NOT recommend that vorasidenib be used by the NHS for treating astrocytoma or oligodendroglioma with IDH mutations.

https://www.nice.org.uk/consultations/3089/2/recommendations

 

However, this is not a final decision and the guidance is currently under consultation and all stakeholders have until 4th November to submit their responses – there is a second committee meeting taking place on 20th November 2025 where it will be reconsidered with new evidence.

 

Astro Brain Tumour Fund has been busy collecting “patient experiences” – thank you to everyone who has responded in this way.  We have also been collecting evidence to dispute NICE’s evidence as to why the drug has not been passed.  We have drawn up a pretty large consultation document!

 

You can comment on the NICE draft guidance document – you need to first create and activate a NICE account – go to https://accounts.nice.org.uk/register then go to

https://www.nice.org.uk/consultations/3089/2/recommendations

 

Also, please sign the change.org petition asking NICE to reverse their decision

Petition · Urge NICE to Reverse Its Decision on the Life-Saving Drug Vorasidenib – United Kingdom · Change.org

Thank you for your help!

IMPORTANT STATEMENT FOR PATIENTS ON VORASIDENIB VIA THE EARLY ACCESS SCHEME
The following statement 1.2 which appears on the NICE draft guidance consultation appears to have caused some confusion for some people:
“This recommendation is not intended to affect treatment with vorasidenib that was started in the NHS before this guidance was published. People having treatment outside this recommendation may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS healthcare professional consider it appropriate to stop”.
We have had a meeting with NICE and they have issued a further, clarifying, statement as follows:
“Update – Please note that section 1.2 of the guidance refers to treatment started in the NHS funded by the NHS, not treatment started as part of the company’s named patient programme. The terms of that programme apply if this treatment is not recommended at the conclusion of this evaluation”.
Clink on the link https://www.nice.org.uk/…/GID…/documents/draft-guidance
Patients on vorasidenib would have signed an agreement at the beginning of the programme which would have stated what the terms are in the case that the NICE Committee does not recommend vorasidenib for routine use in the NHS at the end of the evaluation.
We hope that this has made matters clearer and would emphasise that it is in all eligible LGG patients’ interest to send a statement to NICE via their website stating their case, 4th November is the cut-off date.

 

 

 

 

 

 

SUPPORT for all

Support

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 More

From Small Beginnings ....

Low-grade Glioma Information

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

Recent Fundraisers

A massive thank you to all our fundraisers

Raised : £5,500

HUGH'S PRESS BENCH MARATHON

HUGH’S PRESS BENCH MARATHON 26TH October 2025 On Sunday 26th October, at The Inspired Hub, Hampton, a bench press marathon was held. Tony Butler, Janka Troeber, Soheil Tehrani, Alfie Molloy, Jason Dorner, Garry George, Ray Wilson, Gus Halfyard, Gul Aina and Andrew Maude took part in this challenge which was organised by Hugh Munro. Hugh […]
Raised : £1,407

YORKSHIRE THREE PEAKS CHALLENGE

28th September 2025 Stephen Luwero successfully completed this challenge raising £1,407 (including gift aid) for Astro Brain Tumour Fund.  
Raised : £3,600

NORFOLK FAMILY WALK

Astro Brain Tumour Fund held their Nineteenth Norfolk Family Walk at Holkham, North Norfolk 0n 21st September.  Numbers were down this year but everyone who attended enjoyed their walk in the fine weather. A raffle was held which proved very popular. Since Astro Brain Tumour Fund was registered as a charity in 2010, over £145,000 […]

Latest News

The latest news and information

ACCESS TO VORASIDENIB IN THE UK

VORASIDENIB LATEST MHRA AND NICE We are very happy to announce that  Vorasidenib has now been approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) to treat Grade 2 Astrocytoma and Oligodenroglioma patients who have IDH 1/2 mutations aged over 12. Click on the link for full details. https://www.gov.uk/government/news/vorasidenib-approved-to-treat-patients-12-years-and-older-with-grade-2-astrocytoma-or-oligodendroglioma-with-a-susceptible-idh1-or-idh2-mutation A NICE committee meeting was […]
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18th NORFOLK FAMILY WALK 2024

    SIGN UP FOR THE 19th NORFOLK FAMILY WALK! Sunday 21st September 2025 FULL DETAILS HERE          
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Research

  HIGHER COGNITIVE FUNCTIONS & RETURN TO WORK IN LGGS Professor Stephen J. Price BSc MBBS (Hons) PhD FRCS (Neuro Surg), Department of Clinical Neurosciences, Cambridge Biomedical Campus We are now into the second year of funding PhD student Jasmine Kennedy who is carrying out this project under the supervision of Prof Price.  A questionnaire […]
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