Breaking The Silence: HBA Support Launches Landmark Report On Hereditary Brain Aneurysms At The Houses Of Parliament
- HBA Support
- 10 hours ago
- 4 min read
After nearly two years research, HBA Support has launched the most comprehensive report to date on hereditary brain aneurysm care in the UK, “From Silent Risk To Real Recognition: Ending the neglect of hereditary brain aneurysms and transforming care". This report shines a light on a condition that has remained largely invisible in national policy, clinical pathways, and public understanding.
Around two million people in the UK are currently living with an unruptured aneurysm, most without knowing it. Each year, 5,000 people experience a rupture, 1,700 lose their lives, and a further 2,200 survive but often with life changing effects that can alter their futures and their families’ lives forever.
For 1 in 8 people, the risk is hereditary — passed down through generations, often silently and without warning. HBA Support’s founder, Rebecca Middleton, has lived this reality across three generations of her own family, and her experience reflects that of thousands of others who face uncertainty, fear, and a lack of clear guidance as they try to navigate hereditary risk.
The launch, hosted at the Houses of Parliament with the support of Amanda Hack MP, brought together clinicians, researchers, policymakers, and families affected by brain aneurysms. For many in the room, it was the first time they had seen such a diverse group united around one shared message: the system must do better for patients and families living with hereditary risk.
What the Report Reveals
The new report exposes a system that is fragmented, inconsistent, and deeply inequitable. Key findings include:
Screening access varies widely depending on postcode and individual clinician preference.
Follow up care is inconsistent, with no national guidance on how often people at risk should be monitored.
Psychological support is rarely available, despite the anxiety and emotional toll of living with brain aneurysms and hereditary risk.
Families are left to advocate for themselves, navigating a system that was not designed with their needs in mind.
Patient experience is poorly understood, with very little qualitative research into the psychosocial impact of hereditary brain aneurysms.
These issues are not a reflection of clinicians. who work tirelessly and compassionately, but of a system with no national strategy, no long term screening guidance and no recognition of hereditary brain aneurysms as a distinct condition.
A Preventable Crisis
The report highlights a powerful opportunity: with the right approach, up to 650 ruptures every year could be prevented through cascade screening and timely intervention. Prevention is not only compassionate; it is cost effective. It reduces emergency admissions, rehabilitation needs, and long term social care pressures. As the report makes clear, prevention is a gift to the NHS, not a burden.
The change we’re advocating:
Establish national cascade screening and care guidelines and formally recognise hereditary brain aneurysms as a distinct genetic condition.
Build infrastructure for equitable care: better data collection, GP education, genetic counselling, and psychosocial support as standard.
Ensure comprehensive post‑rupture rehabilitation in line with stroke pathways—consistently, across regions.
HBA Support’s goal is simple: to drive meaningful policy change so that no family affected by hereditary brain aneurysms is left to navigate risk alone. Through this report, the charity hopes to spark a national conversation about hereditary brain aneurysms and ensure the condition is finally recognised within mainstream health planning. A key ambition is the development of a clear national care pathway, so that every family, regardless of where they live, can access consistent screening, monitoring, and follow up care.
The report also highlights the need for better understanding of the emotional and psychological impact of living with hereditary risk. Many families carry not only the medical burden but the fear, uncertainty, and generational trauma that come with it. Improving recognition of this impact is essential to creating a system that supports the whole person, not just the clinical diagnosis.
These recommendations are not radical — they are reasonable, evidence based, and urgently needed.
"This is a pivotal moment for our charity and community. We are bringing together patients, policymakers, clinicians, geneticists, and researchers to drive change forward. "
"We hope we can put the recommendations from the paper into action and start driving change for the thousands of people living today with familial brain aneurysms and the devastating impact of this genetic disease."
Rebecca Middleton, Founder of HBA Support
A Community Ready for Change
The launch event demonstrated something powerful: when clinicians, policymakers, researchers, and patients come together, change becomes possible. The room was filled with people who rarely sit side by side, yet all shared one belief—we can do better for families living with hereditary risk.
HBA Support will continue to push for recognition, better care, and a future where families are seen, supported, and counted.
Help us by signing our Open Letter
To help drive this change, HBA Support has invited attendees, and the wider community, to sign a joint letter to the Secretary of State for Health and Social Care, calling for a meeting and a commitment to review the report’s findings. Please support us by signing our letter here.
You can also help by:
Please email your MP and ask for their support (Download a letter template here.) Find out who your MP is here: https://members.parliament.uk/FindYourMP.
Follow us on Facebook, Instagram or LinkedIn and like, share and comment on our posts to spread the word.
Join in - patient voices are powerful in shaping policy and service design so please join in and share your story by emailing us at support@hbasupport.org
Together, we can turn evidence into action and change reactive crisis response into proactive prevention and empowerment.
Thank you for your continued support
More about Hereditary Brain Aneurysm Support
Visit our support page for free resources and patient stories from our community.
