Have your voice heard: What are the experiences of families with a diagnosis of Familial Aneurysm Syndrome?
Could you help us answer this question: What are the experiences of families with a diagnosis of Familial Aneurysm Syndrome?
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Sharing Hope on the Horizon for people and families affected by hereditary brain aneurysms
From the information we can find, we estimate that there are approximately 2 million people in the UK living with an unruptured aneurysm, and 16% of these individuals could have a strong family history, indicating a familial or genetic pattern. This means there could be over 320,000 people in the UK that could be helped and supported by HBA Support.
We've spent the last 2 years understanding the research currently out there and are now pushing the research community to fill in the gaps that will bring hope on the horizon for our community.
We're also providing more information and support than ever. See our webinars and support below.
How Hereditary Brain Aneurysm Support is bringing Hope on the Horizon for our community:
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You’re not alone - we’re here for you
We are celebrating two years of progress, developing more ways to support our community through our refreshed website, new regular newsletter and social channels as well as downloadable guides and quick links to further support partners, ensuring no one has to face this journey alone. We’re here for you, to listen to your needs and concerns. Your feedback is vital to us, helping tailor our services to better serve the community.
How can we help more? Get in touch to let us know.
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We’re ready to grow
We’ve spent last two years building and developing our infrastructure and support channels so we can be as accessible as possible. We’re totally self-funded so we’ve also created fundraising portals so we can keep moving forward. You can now donate live from our website and our Local Giving page.It is also easy to set up an event donation page if you have a challenge ahead and would like to support us.
Go to our fundraising page and click the "Fundraise for us" button below our details. We're very happy to help you set on up - drop us a line at support@hbasupport.org.
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Collaborative efforts
We’re committed to working with like-minded organisations who are doing great work in the field of brain aneurysms and rare disease. We’re finding ways to join together to make our voices heard and make sure were working as efficiently and effectively as possible.
If you're from a group or organisation and would like to work with us, please get in touch.
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We’re leading research in partnership with the experts
The NICE Guidelines emphasise the need for more research to improve diagnosis and treatment of aneurysmal subarachnoid haemorrhage. Our latest research projects, conducted in partnership with leading academics and research institutions, aim to improve early diagnosis and treatment of brain aneurysms. By contributing to and disseminating research findings, we will help pave the way for advancements in the field.
Find out more about the research projects we are partnering with.
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We’re talking to the healthcare and medical experts
Our own new research projects are beginning later this year and we hope these will shine a light on the gaps and improvements needed in the patient pathway as well as examining the patient experience.
We'll also be looking at the Neuro teams processes and support during screening, diagnosis, treatment and ongoing care. This marks the first time patient views have been collected in a meaningful way.
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We’re talking to the researchers
Studies have identified common genetic variants linked to hereditary brain aneurysms, but more research is necessary. We're engaging with researchers and geneticists to ensure the right questions are being asked, focusing on understanding the genetic factors that contribute to hereditary brain aneurysms.
Find our more about the latest research projects
We need your help!
If you have been diagnosed with a familial intracranial aneurysm - that means you have an aneurysms and a strong family history of them - and would like to help us improve the patient support available, then please get in touch at support@hbasupport.org.
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Webinars
Finding hope on our own horizons - how to live with fear and health anxiety
Listen to psychotherapist Kym Winter, Founder and Clinical Director of Rareminds, the first specialist, non-profit, counselling and psychotherapy service in the UK for people impacted by rare disease, talking about coping strategies and sharing resources and information to help you live as well as possible with your rare condition.
Hereditary Brain Aneurysm Support explores the Risk Of Aneurysm Rupture (ROAR) Study
Watch our special webinar on the amazing work of the ROAR study which aims to understand more about aneurysms and risk.
Listen to Prof. Diederik Bulters, Consultant Neurosurgeon and ROAR Chief Investigator, to hear how this important research will make a difference to our knowledge of the disease, patient care and patient experience. Look out for the new webinar this September.
Our Stories
"I found HBA Support of immense value both in the content and community. Knowing there are others going through the same thing provided me with much-needed support and understanding"
Sharing our stories is a powerful way to connect with people in our community. This month Andy Motch has kindly agreed to share his story.
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.
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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
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