Support for you
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.
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Support following a diagnosis
Have you or someone you know recently been diagnosed with a hereditary brain aneurysm?
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Below are a series of guides that are free to download. These free patient guides are for people at the early stage of their journey and were prepared by genetics professionals working in the NHS today. Word versions of each guide are available on request by emailing david@hbasupport.org
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These guides are for information and do not constitute medical advice. We always recommend that you discuss any concerns or medical worries with your GP and/or relevant consultant.
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Free Patient Guides
These guides have been made possible through the Magic Little Grant partnership between Localgiving and Postcode Places Trust.
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Postcode Places Trust is a grant-giving charity funded by players of the People's Postcode Lottery.
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Localgiving is the UK’s leading membership and support network for local charities and community groups.
NEW GUIDE - 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:
​What to do if you suspect a link
What to do if you are diagnosed
Where you can go for more information
Download pdf version: Understanding Familial Brain Aneurysms
NEW GUIDE - Living with Health Anxiety
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 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
Why it may run in families
Treatment options available
Download pdf version: The Science Behind Familial Intracranial Aneurysm Syndrome
How to Talk to Your Family Following a 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
Screening options for family members
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?
How to access a counsellor
What questions to ask
How to talk to your family about the condition
Potential options for screening
Download pdf version: An Introduction to Genetic Counselling
Receiving a diagnosis of a hereditary 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:
Connect with Our Supportive Community: Join our Facebook group to connect with others diagnosed with hereditary brain aneurysms and their families. 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
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.