Hereditary Brain Aneurysms - HBA Support For Families

Introducing HBA Support

Hereditary Brain Aneurysm Support (HBA Support) is a new not-for-profit organisation, set up to provide information and support for people affected by hereditary brain aneurysms and their families.

Our aim is to support people affected by hereditary brain aneurysms, building a community that works with families that have been given a hereditary brain aneurysm diagnosis, or suspect there is a pattern or cluster in their family. We will support people affected, improve patient information and increase research and understanding into brain aneurysms that run in families.

Creating a HBA Community

HBA Support is a new organisation with a mission. We’re working hard to support and inform people affected by the familial condition. We’re building a community and connections with researchers and experts to raise awareness and understanding of hereditary brain aneurysms. We want to help people share their experiences to support other families affected, improving the knowledge and understanding of this rare disease.

Together, we’ll work to increase research and understanding of hereditary brain aneurysms within the medical and research community and wider society.

HOW YOU CAN HELP

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. It’s only when they rupture (burst) that they can be fatal or life-changing for the person and their family.

When a rupture happens, it is usually very sudden and without warning.

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 when it happens, it can impact families severely.

If you have a strong family history of brain aneurysms there is 2.3% to 29.4% chance of having an unruptured brain aneurysm, compared with 0.2% - 8.8% of the general population.

Get involved

Get involved and help others. If you have been impacted by familial or hereditary brain aneurysms, we need your help. Sharing your story could help other people and improve understanding across the NHS and in the research community. We’re also looking for skilled volunteers and patient representatives to help grow our new organisation and achieve our goals.

If you or your family have been impacted by hereditary brain aneurysms and you have skills and time to share, please get in touch. Our new and friendly organisation would love to hear from you.

GET INVOLVED