We’re just at the start of our journey to create a patient-led organisation with a small team of part-time staff. As a new not-for-profit, we are dependent on donations to help us achieve our goals.
Our ambition is to create and signpost information, resources and peer support for people living with hereditary brain aneurysms.
And in the coming years, we aim to improve the patient experience by working with clinicians, ensuring people can access screening, treatment, and support far sooner. And we want to work with researchers and genetics so we can build a better understanding of this rare disease. Ultimately, we want to bring patients, clinicians and researchers together to save lives, sooner.