With one in three people knowing someone affected by a brain tumour, we are proud to be the leading voice of the brain tumour community by driving change through our influential campaigning and lobbying policymakers across the UK.
Our campaigning is an essential component of our charity’s work, and we reached new heights this year engaging with both the Government’s Ministerial Health Team, and the Shadow Health Team, by advising both current and future policy.
As we approach the end of 2025, we’re pausing to celebrate a handful of highlights.
Driving change across the nation
Over the past year, Brain Tumour Research has made significant strides in raising awareness and influencing change across the UK. Through impactful events, meetings and cross-party engagement, we have continued to highlight the urgent need for greater research funding and better patient outcomes in England, Scotland, Wales and Northern Ireland.
We are proud to have continued to provide the secretariat to the All-Party Parliamentary Group on Brain Tumours (APPGBT), working closely alongside its Chair Dame Siobhain McDonagh, a passionate and powerful advocate for change. This year, the APPGBT has discussed key issues for our community, including tissue storage, the allocation of research funding and access to clinical trials. It continues to be an invaluable platform for fostering discussions and identifying tangible ways to improve options for families.
Our CEO Dan Knowles addresses the APPGBT
In Scotland we have campaigned and will continue to lobby the Scottish Government to mandate and fund whole genome sequencing (WGS) for all patients to provide crucial biological data. In addition, we are highlighting the known limitations in the genomic medicine service, including workforce shortages of scientists and clinical geneticists, long waiting lists and slow turnaround times.
MSPs rally behind our flagship Wear a Hat Day campaign
Our work in Wales has focused on tackling inequities in access to treatment and research. During Brain Tumour Awareness Month, patients and families joined us at the Senedd to highlight the need for better access to clinical trials and innovative treatments for brain tumour patients in Wales.
In a landmark step, we hosted our first Stormont event in September 2024, bringing together Members of the Legislative Assembly (MLAs) and health leaders to address diagnosis pathways, data collection and local research investment. We have set the groundwork for future collaboration and will continue these conversations in 2026.
Influencing game-changing legislation
In a year of impactful campaigning activity, the Charity has helped shape the Rare Cancers Bill which, if it becomes an Act in 2026, will transform the rare cancer landscape.
We played a key role in helping to develop the Bill, which was proposed by Dr Scott Arthur, MP for Edinburgh South-West, following conversations with APPGBT Chair, Dame Siobhain and with Brain Tumour Research at the Labour Party Conference in 2024.
As the Bill broadened its glioblastoma focus to include the wider rare cancer research area, Brain Tumour Research organised roundtable meetings to work alongside colleagues in the rare cancer community and highlight critical gaps in research, treatment and patient support.
The Bill must now pass through the House of Lords, but we are getting ever closer to tackling the inequalities faced by patients with rare cancers.
Scott Arthur MP with Dame Siobhain McDonagh
Building strong collaborative relationships
Collaboration is key to our mission to increase the national investment in research into brain tumours and we have fostered relationships with key parliamentarians to ensure the needs of our community are heard.
We will continue to tell Government that brain tumours are a priority, and this issue gained traction when we attended a meeting with Minister for Public Health and Prevention Ashley Dalton, alongside one of our highly committed supporters Laura Kurtul.
Laura gained a pledge of support during Prime Minister’s Questions, as The Prime Minister himself called for the milestone meeting following the loss of Laura's six-year-old son to a medulloblastoma in February 2024. The successful discussion ended with a pledge to meet again to hold further discussions.
Minister Dalton said: “We recognise that more needs to be done to stimulate high-quality, high-impact research into brain tumours. That is why we are committed to making a real difference for patients with brain cancer. We will leave no stone unturned until they get the first-class care that they deserve.”
Minister for Public Health and Prevention Ashley Dalton with Laura Kurtul and Laura’s MP, Alberto Costa
Our charity will continue our work to deliver those priorities for brain tumour patients that increase investment in research and lead to better outcomes.
To stay up to date with our campaigning activities and to add your voice to our calls for change, sign up to campaign with us.
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