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.
On this page, you'll find a range of resources to support you and your family following a diagnosis of a hereditary brain aneurysm.
Have you or someone you know recently been diagnosed with a hereditary brain aneurysm?
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
These guides are for information and do not constitute medical advice. We always recommend you discuss any concerns or medical worries with your GP and/or relevant consultant.
Hereditary brain aneurysms, sometimes known as familial intracranial aneurysm syndrome, is a rare disease and information about the condition isn't always available. This guide explains the genetics behind hereditary brain aneurysms to provide further understanding after a recent diagnosis.
Learn more about:
Download pdf version: The Science Behind Familial Intracranial Aneurysm Syndrome
A brain aneurysm diagnosis can cause a lot of distress and worry about the impact on family members.
This guide is to help people talk to family members after a diagnosis and includes the following:
Download pdf version: Talking to my family about my diagnosis
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.
This introductory guide includes:
Download pdf version: An Introduction to Genetic Counselling
The Brain Aneurysm Foundation is dedicated to advancing research, providing support, and raising awareness about brain aneurysms.
The Brain Aneurysm Foundation aims to raise awareness about brain aneurysms and provide support for those affected. The key focus areas of their work are early detection through highlighting 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 and specifically the Bay Area Aneurysm and Vascular Malformation Support Group in San Francisco.
To watch their informative education and research webinars visit their library: Brain Aneurysm Foundation Webinars
NHS Lothian has produced a useful guide for people who are considering screening for brain aneurysms. To download a pdf of the guide visit this link: Information for adults considering screening for brain aneurysm
In April 2022, Dawn Roberts, a 63-year-old Optometrist from West Yorkshire, found out that she has a 9mm saccular brain aneurysm. She underwent CT screening after her daughter Carmel suffered a subarachnoid haemorrhage (SAH) at the young age of 28 which she fortunately survived. Dawn also has a sibling with a brain aneurysm, and doctors believe that her condition is hereditary. You can read Dawn's story here.
