Glioblastoma community hub
People who are living with a Glioblastoma (GBM), at the point of diagnosis or at recurrence, tell us that hours are being spent searching for Glioblastoma treatments that sit outside the current NHS standard protocol. The current NHS standard protocol for treating a GBM can be found below.
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Dedicated resources for people living with a Glioblastoma (GBM)
At brainstrust we’re here to help you live life with a brain tumour. We know that there is a huge source of knowledge within the brain tumour community about novel treatments that would benefit people who are living with a GBM. These are novel clinical treatments that might make a difference, they may not be mainstream but there is some evidence of efficacy. We’d rather this information was in one place, to save you spending duplicative time looking for potential treatments, when maybe you’d rather be taking a walk in the sun, or planning your next break, or spending time with your family and friends.
The information here has come from the community and is for the community. We are not recommending these treatments, just signposting and sharing what information there is so that you can begin to have further conversations. Only you know what your appetite for risk is, what your context is and what your values are. This information will be updated regularly.
Current, novel Glioblastoma (GBM) treatments and trials
Here you can read about current trials and novel treatments and therapies. This has been compiled to save you time researching, and has been developed with the GBM community.
Glioblastoma (GBM) support, information and events
In this section you will find practical help and Glioblastoma resources, including links to online brain tumour information and tumour specific events made to help you feel less alone and less afraid after a Glioblastoma diagnosis.
Stories from people living with Glioblastoma
If you or someone close to you have been diagnosed with a Glioblastoma, it may help to know you are not alone. You can also learn from others’ experiences.
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decrease in loneliness for people we support.
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This information has been made accessible by the family of Philip Jones, who climbed 3 peaks in Wales to create this legacy for Philip.
A Love Remembered
Philip Edwin Jones
1961-2020
“I Wish You Rock”