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.
And 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.
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.
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.
We want to work closely with researchers, clinicians, nurses and specialists to support their work and to share our experiences. If you’re working in the field or have a research interest in the condition and would like to connect, please get in contact.
We’re looking for scientists, clinicians, researchers and relevant university students to support us as we develop and grow as an organisation. We’d love to hear from you if you have time and experience to share. We have a number of roles within the organisation where you could help.
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.
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 mailing list via the form below.