Support for you
Support following a diagnosis
Have you or someone you know recently been diagnosed with a hereditary brain aneurysm?
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HBA Support is dedicated to helping individuals and families affected by brain aneurysms. We understand the importance of having access to reliable resources and a supportive community.
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On this page, you'll find a range of resources to support you and your family following a diagnosis of a hereditary brain aneurysm.​​​​
Brain Aneurysm Friends Online Support Group
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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When we have session available we will list them here.
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Free Brain Aneurysm Patient Guides
Below are a series of guides that are free to download. These guides have been designed for anyone impacted by brain aneurysms and those with hereditary brain aneurysm risk. They are based on our communities experiences, in partnership with experts, for your information and consideration and do not constitute medical advice.
For any medical concerns or questions, always consult your GP or a qualified healthcare professional.
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Word versions of each guide are available on request by emailing david@hbasupport.org
New Brain Aneurysm Patient Guide
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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 when you were diagnosed with a brain aneurysm?” 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.
Living With A Brain Aneurysm Lifestyle Guide
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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.
Understanding Familial (Hereditary) Brain Aneurysms
This guide explains the difference between sporadic and hereditary brain aneurysms and what you can do if you suspect a family pattern or link.​
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Learn more about:
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​What to do if you suspect a link
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What to do if you are diagnosed
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Where you can go for more information
Download pdf version: Understanding Familial Brain Aneurysms
Living With Health Anxiety After a Brain Aneurysm Diagnosis
This free guide that looks at the important worries you might have, to do with our communities condition and offers advice and tips to live with our understandable anxieties.
Download pdf version: Living with Health Anxiety Guide
The Science & Genetics Behind Familial Brain Aneurysm Syndrome
This guide explains the genetics behind hereditary brain aneurysms to provide further understanding after a recent diagnosis.
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Learn more about:​
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What causes the condition
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Why it may run in families
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Treatment options available
Download pdf version: The Science Behind Familial Intracranial Aneurysm Syndrome
How To Talk To Your Family Following A Brain Aneurysm Diagnosis
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This guide is to help people talk to family members after a diagnosis and includes the following:
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​How to talk to your family following a diagnosis
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Screening options for family members
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Talking to young people and children
Download pdf version: Talking to my Family about my Diagnosis
An Introduction to Genetic Counsellors
After being diagnosed, you may be referred to a genetic counsellor. These experts provide tailored information, support, and guidance to help you navigate your unique situation.
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This introductory guide includes:​
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What is genetic counselling?
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How to access a counsellor
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What questions to ask
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How to talk to your family about the condition
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Potential options for screening
Download pdf version: An Introduction to Genetic Counselling
Receiving a diagnosis of a brain aneurysm can be overwhelming, but remember that you're not alone. Our Hereditary Brain Aneurysm Facebook page can support you and provide a wealth of information.
We encourage you to:
Follow us on Facebook and Instagram to keep up to date with the support available for people diagnosed with brain aneurysms and their families. Here you will be able to comment and share experiences, ask questions, and find emotional support from others.
Reach Out: If you have any specific questions or concerns about the diagnosis process or hereditary brain aneurysms, please get in touch. Our compassionate community and experienced team are here to provide the support you need.
Community Stories
Read some of the stories shared by our community
Patients' Voices
What Other Support Is Available?
Brain Aneurysm Foundation (Based in the USA)
The Brain Aneurysm Foundation is dedicated to advancing research, supporting, and raising awareness about brain aneurysms.
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The Brain Aneurysm Foundation aims to raise awareness about brain aneurysms and support those affected. The key focus areas of their work are early detection through highlighting that aneurysms are treatable if detected early, education by offering information on their website about the condition, and support groups in various locations across the U.S.
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To watch their informative education and research webinars, visit their library: Brain Aneurysm Foundation Webinars​
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Rareminds
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Rareminds is a specialist, non-profit, rare disease counselling and psychotherapy service in the UK. Rareminds has a free Wellbeing Hub with a range of resources and information specially tailored for people living with a rare condition. Visit the Wellbeing Hub
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Gene People
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Gene People is a UK charity that supports anyone affected by a genetic or hereditary condition, including their relatives.
Gene People has a free, confidential helpline and many free resources on their website. Find out more about the Gene People
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Additional Useful Guides
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NHS Lothian has produced a useful guide for people considering screening for brain aneurysms. To download a pdf of the guide, visit this link: Information for adults considering screening for brain aneurysm.
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The Walton Centre NHS Foundation Trust and Charity have put together an accessible and easy-to-understand guide for those concerned about the possibility of hereditary brain aneurysms affecting you or your loved ones. This comprehensive resource covers essential information about screenings and what to expect as a patient. Check out the guide at this link: Brain Aneurysms (Including screening for familial aneurysms)
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Navigating the journey with a hereditary brain aneurysm can sometimes seem like a daunting task. But at Hereditary Brain Aneurysm Support, we want to ensure you feel equipped and empowered at every step.
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To help you better understand and manage your diagnosis, we've curated a comprehensive list of Frequently Asked Questions (FAQs).
From understanding symptoms and treatments to learning about the latest research, our FAQ section is your go-to resource. It's designed to provide you with clear, easy-to-understand information.
So, whether you're newly diagnosed or you've been on this path for a while, we're here for you.
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Check out our FAQs to get the answers you need, and remember, you're not alone in this journey.