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.

On this page, you'll find a range of resources to support you and your family following a diagnosis of a hereditary brain aneurysm.

Support following a diagnosis

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 

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.

The Science & Genetics Behind Familial Aneurysm Syndrome

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:

  • 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

    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:

    • 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. 

    This introductory guide includes:

    • 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

      I'm feeling worried, who can help?

      We have a range of Frequently Asked Questions for anyone impacted by a hereditary brain aneurysm diagnosis. Find them on our Information Page.

      The Brain & Spine Foundation is also a great place for and information, helping you to tackle concerns and help inform your choices and plans. The information and support available includes:

      If you are worried, you could contact your GP who can talk you through options and may refer you to a genetic counsellor (a specialist in hereditary conditions).

      For more immediate support, you can talk to a trained specialist at the Brain & Spine Foundation. Their Helpline nurses can help you by talking through your questions and providing explanations on anything you don’t fully understand. They are there to help and can be contacted on 0808 808 1000.

      Speak to Brain & Spine Foundation

      What Other Support Is Available?


      Brain Aneurysm Foundation (Based in the USA)


      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


      Additional Useful Guides


      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 

      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)

      Share Your Story

      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. 

      Join Our Facebook Group

      Seeking support and information?

      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 in general, feel free to reach out to our Facebook group. Our compassionate community and experienced team are here to provide the support you need.

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      HBA Support is a voluntary and non-medical organisation. We take no responsibility for an individual’s health. For any concerns or worries, please always speak to your GP or a clinical professional.