Brain Aneurysm
Awareness Month
2025
Brain aneurysms are more common than you think – around 1 in 30 people has one. For Brain Aneurysm Awareness Month 2025, we’re throwing a spotlight on the facts and figures around our condition to help people understand the disease, dispel some myths and ensure that our community has the information it needs to live well, make informed choices and understand more.
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On our hub, you’ll find new patient guides, information on our New Peer Support Sessions and details about our exciting new podcast called Brain Aneurysms and Beyond!
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Please support us further by following us on Facebook, Instagram or LinkedIn and sharing and liking our posts to increase awareness. Please sign up for our newsletter to stay up to date on all of our support, news and events. You can also donate and fundraise for us.
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Key Facts
New Patient Guide
We’ve heard that people feel lost and alone at the start of their screening and diagnosis journey, so we've built a guide from the voices of people who’ve been there. Through heartfelt conversations and thoughtful surveys, we asked, “What do you wish you’d known from day one?” And then we listened.
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With those insights, we partnered with leading experts - interventional neuroradiologists, neurosurgeons, specialist neuro nurses, genetic counsellors, and health communicators—to ensure every page is accurate, clear, and truly helpful. It’s taken over 18 months of dedication, collaboration, and care.
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This guide is for patients, by patients—with the wisdom of medical professionals and the compassion of lived experience. It’s here to replace fear with facts, and isolation with support.
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Thank you to our steering group and to the many patients and health care professionals who supported the guide and provided expert lived experience and medical feedback. We are grateful for your help.
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Many thanks to Medtronic for their support.
New Lifestyle Guide
Our new Lifestyle Guide has been developed to support the practical everyday questions you might have about living with an unruptured aneurysm or post rupture. It was created following the valuable feedback from our patient survey. Feel free to let us know if you have any more questions, you would like us to cover.
Our Stories
Connect Us
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Brain Aneurysm Friends Online Support Group With the Brain and Spine Foundation
We know how valuable the peer support groups can be for patients and carers. We're excited to launch our first Brain Aneurysm Friends Online Support Group Session, that we hope will be a safe space for patients and carers to talk about their key challenges and share their experiences.
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Our first session will be focused How to Live Well with an Unruptured Brain Aneurysm and we'll be working with the Brain and Spine Foundation to bring you expert support and help guide our friendly chat.
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Anyone impacted by an unruptured brain aneurysm is welcome to come along, it’s virtual and on Zoom, free to attend and it won’t be recorded so you can speak freely. Please register here to book a space.
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We hope to follow this session with different topics and challenges, like living well after a brain aneurysm rupture.
NEW PODCAST!
Introducing Brain Aneurysms and Beyond
‘Brain Aneurysms and Beyond’- the first of its kind in the UK, focused entirely on brain aneurysms, is out now!
The new series will throw a spotlight on the condition and explore patient stories, the science, the latest research, and current treatments.
The friendly and informative Podcast will break down barriers and throw its doors open to aneurysm patients, specialist clinicians, researchers, and those who our condition has touched.
We’ll share experiences, the latest research, and clinical thinking. Rebecca Middleton, a brain aneurysm survivor, hosts it and each episode will feature interviews with neurosurgeons, nurses, genetic counsellors, researchers, families, and patients. The conversation will open up vital questions around diagnosis, treatment, heredity, innovation, and the emotional impact.
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Available on all streaming platforms.
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Hope and Inspiration
Our Stories
Patient voices are so important for our community, and Maria has kindly agreed to share her amazing story of resilience and hope with us. ​
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Maria’s story: from brain aneurysm survivor to inspiring volunteer
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“I made myself get up and walk, even when it was hard. I joined in with everything I could and pushed myself a little bit each day,” she says. “For me, recovery is about mindset. You’ve got to keep going, keep believing you can do more, and not give up.”
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“I believe screening could save lives, and if I’d been screened earlier maybe this could have been prevented.”
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Making our voice heard
Being the Patient Voice in World Leading Research
We are delighted to be the Patient Partner supporting the world's first groundbreaking ROAR Study and the ROAR-DNA Project. The ROAR Study, which stands for Risk Of Aneurysm Rupture Study, will impact how unruptured brain aneurysms are treated and monitored, while the ROAR-DNA Study will explore the genetic links that may one day give us the tools to understand who may be at risk genetically from aneurysms.
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As a charity representing patients impacted by brain aneurysms and their families, some possibly having a hereditary risk, we know how critical this research is for better patient care and personalised decision-making. This research has the potential to change the way we treat aneurysms for generations to come.
We're excited to hear the first results of the ROAR Study, hopefully out soon and we’re grateful to our Chief Medical and Research Officer and Trustee Professor Diederik Bulters, who is also the Chief Investigator at the ROAR Study, and the wider incredible team for working so hard for our community and pushing the boundaries in neurovascular research.
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The ROAR-DNA study will be recruiting for participants shortly – please sign up for our newsletter to hear more news as soon as it’s available.
We're here to support people and patients. One of the ways we do this is to talk to policymakers to raise awareness of brain aneurysms and highlight the current lack of support in the NHS.
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In June, Amanda Hack, our local MP submitted the following question to the Secretary of State for Health and Social Care on our behalf. The questions and reply can be seen here, and although it's missing many of our key areas of concern, we are grateful to Amanda Hack for all of her support.
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This is just a step on our road to making the changes needed to better support our community and the thousands of patients affected by aneurysms every day.
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Our next step is to pull together the information gathered of the last two years into a plan for the future and to launch this as loudly as possible.
Talking to policy makers
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Introducing HBA Support
Hereditary Brain Aneurysm Support (HBA Support) is the UK's first patient-centred organisation to provide information and support for people affected by hereditary brain aneurysms and their families.
We support people affected by hereditary brain aneurysms, building a community for families that have been given a hereditary brain aneurysm diagnosis or suspect there is a pattern or cluster in their family.
Since 2022, we've been supporting hundreds of people affected, working with the medical, research, and policy communities to improve information and research.
What is a brain aneurysm?
An aneurysm is a bulge in a blood vessel caused by a weakness in the blood vessel wall, usually where it branches.
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Thousands of people live well with brain aneurysms without knowing they carry one. Only when they rupture (burst) can they be fatal or life-changing for the person and their family.
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When a rupture happens, it is usually very sudden and without warning.
Get Involved
Are brain aneurysms hereditary?
Most cases of brain aneurysms are sporadic, meaning they are sudden and have no genetic hereditary pattern.
However, sometimes, cases of brain aneurysms cluster or run in families. This is rare, but it can impact families severely when it happens.
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If you have a strong family history of brain aneurysms, there is a 2.3% to 29.4% chance of having an unruptured brain aneurysm, compared with 0.2% - 8.8% of the general population.
Information and Support
Proud to be a part of
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