Get Involved

Our aim is to support people affected by hereditary brain aneurysms through accessible information and support.

We want to build our organisation based on your experiences and provide a platform for people impacted by the hereditary condition to be heard.
We want to build a community. A safe space to find support and information, share stories and create a network.
We want to collaborate with clinicians to increase awareness and work with researchers to further understand the genetic causes of this rare disease.

We’re a new and growing not-for-profit organisation and there are many ways you can support our work and get involved.

Connect with other people and families

We want to help people connect with others in a similar situation, share experiences of hereditary brain aneurysms and provide support to one another if they have a familial brain aneurysm diagnosis or have a family member with the condition.

We’re working hard to make this happen – and will provide more details soon. If you’re interested in connecting with others, hearing other people's stories or want the latest news and resources from HBA Support join our Facebook Group.

Join us on Facebook

Volunteers needed

We need help from volunteers who can spare some time to help us grow our new patient-focused organisation. If this sounds like you please get in contact.

We’re also looking for volunteers to join our Patient forum. If you or a family member has been impacted by the hereditary condition, please get in touch. We’d love to hear from you.

Get In Touch

Be part of our new Patient Panel

We are looking for people to join our patient panel and ensure the views of people affected by familial brain aneurysms, including carers and family members, are at the heart of HBA Support.

More about the Patient Panel

Join our Advisory Panel

We're currently recruiting for an Advisory Panel to help shape our work, especially anyone with a genetic counselling, clinical or not-for-profit background. We're just at the start of our journey, so this is a fantastic opportunity to make a significant impact for people affected by this rare disease.

Find Out More

Work with us to make a difference

HBA Support is committed to improving the care for those impacted by hereditary brain aneurysms. The more they are understood, the better the possible outcomes for patients and their families.

We're interested in working with individuals and organisations who share similar goals and values so that we can create new opportunities, support people affected and improve patient support and research.

HBA is a Community Interest Company (CIC) which means we’re a Not-for-Profit organisation. Everything we do is for the benefit of people living with brain aneurysms patients and their families.

We are committed to open and transparent practice and putting in place a robust independent governance structure which includes a patient forum, an advisory panel and an executive committee. If you’d like to get involved and help grow our community then get in touch.

Get In Touch