We’re looking for people impacted by familial brain aneurysms, carers and their families to join a patient panel as part of our new Governance team. This is an amazing opportunity to shape the future of a brand-new patient-focused organisation working to support those affected by the rare disease.
We’re building an organisation based on lived experiences, providing a platform for people impacted by the hereditary condition to be heard. It’s vital that patients, families, clinicians, researchers and industry experts are part of discussions that help determine our direction.
Our patient forum is a crucial part of making this happen and you’ll have a huge and important impact on the work we’re able to do.
Can you help us?
We’re looking for 6-7 people who will ensure the views of people affected by familial brain aneurysms, including carers and family members, are at the heart of HBA Support. You’ll have the opportunity to meet and collaborate with like-minded people, working together to improve outcomes for people affected by hereditary brain aneurysms.
What's involved?
As a panel member, you will be asked to help raise awareness of HBA Support and its objectives. The panel will meet virtually a minimum of two times a year (once every 6 months). The panel will review strategy documents, public-facing communications, and fundraising materials. In addition, through their experiences, they will host discussions about the challenges of the patients and their families, and opportunities for HBA Support.
You will normally be required to read some papers in advance. There will occasionally be electronic communications and work required between meetings. It is anticipated this role will take up to 4 hours a month.
For more information on how to apply, by contacting david@hbasupport.org.