About Hereditary Brain Aneurysm Support
We're a new non-profit organisation that aims to provide information and support for people and families affected by hereditary brain aneurysms.
Most brain aneurysms are sporadic, meaning they are sudden and have no genetic or hereditary pattern. However, sometimes cases of brain aneurysms cluster or run in families. Known as familial intracranial aneurysm syndrome, this is a rare condition with a considerable impact on families.
We support people and families with a hereditary brain aneurysm diagnosis or who suspect a pattern or cluster in their family. We're also raising awareness of the rare condition amongst doctors, the NHS and our communities - and are pushing for further research into the genetic causes.
About the Advisory Panel
By joining the Advisory Panel, you'll be supporting people affected, improving patient information and increasing research and understanding into brain aneurysms that run in families.
No trustee or consultative experience is required to join the panel, and we welcome applications from all backgrounds. However, experience in the following is preferable to help HBA Support to fulfil its vision.
Genetic Research | Genetic Counselling | Neurosurgery | Neuro Nursing | Medical Research | Medical Devices | Charity or Not-for-Profit Organisational Governance | Fundraising/Funding | Health Policy
We also want to hear from you if you have other relevant experience and feel you can make a difference.
About the role
The Advisory Panel will meet formally twice a year (online).
As an advisor, you will provide your experience, viewpoint and advice on relevant issues on a
pro-bono basis. You will be required to read some papers before meetings, and there will be some communication and work needed between sessions. This will be limited to help manage your time.
In total, you'll be expected to commit between 30 minutes - 4 hours per month.
Get in touch
For more information, including how to apply, email rebecca@hbasupport.org
We can't wait to hear from you.