NEW REPORT:
From Silent Risk to Real Recognition:
Ending the neglect of hereditary brain aneurysms and transforming care
Our new report issues a clear call to action for policymakers, clinicians, researchers and partners: to change stories — and save lives.
After two years research and listening to our community, we’re proud to share with you our report “From Silent Risk To Real Recognition: Ending the neglect of hereditary brain aneurysms and transforming care.”
Brain aneurysms affect thousands of families across the UK, yet they remain largely unrecognised within national healthcare policy and practice. Too often, ruptured aneurysms are treated as isolated, tragic events rather than warning signs of an inherited risk that could be identified and managed earlier.
Our report presents the most comprehensive picture to date of how people affected by hereditary brain aneurysms are screened, monitored, treated and supported in the UK today.
The evidence reveals a fragmented and inconsistent approach to care:
Download our report now to read our nine recommendations to transform brain aneurysm care for all and support families affected by hereditary brain aneurysms.
Key facts about hereditary brain aneurysms
Working Together To Drive Change For People With Brain Aneurysms
Our report sets out clear, urgent recommendations to transform care for families affected by hereditary brain aneurysms.
Recognising hereditary brain aneurysms as a distinct genetic condition, supported by tailored screening and care pathways, would enable earlier detection and timely intervention for people at risk – saving lives, preventing lifelong disabilities and reducing long-term costs to the NHS.
Families should not have to fight to be seen, heard or supported. A healthcare system that identifies risk early, listens with compassion, and acts consistently will change stories – and save lives.
The time to act
is now!
Sign our letter to show your support
We’re asking people and organisations to sign our open letter to the Secretary of State for Health and Social Care, asking him to read this report, to meet with us, and to begin a national conversation about brain aneurysms.
Our Patient Stories
“It’s a miracle I’m here, but I’m living in constant fear of what could happen next. The NHS saved my life, but now I face the terrifying prospect of not being able to access vital screening or accessible services that could save me again.
“The system just doesn’t have the consistency or understanding that we need to protect people like me - or my daughter - who are at higher risk due to our family history.” Andy Motch
“Knowing about it meant I could take control. Understanding the treatment options really helped me come to terms with it and look forward again.
“If you think aneurysms might run in your family, don’t be afraid to ask about screening, and if you do get a diagnosis, remember that there is hope. Treatment is usually very successful, and there is life beyond the fear.” Dawn Roberts
What else we are doing
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.
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.
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.
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.
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.
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
.jpg)
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.
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.
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.
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
_edited.png)