Introducing our new Patient and Family Brain Aneurysm Advisory Panel – Your Community Needs You!

Hereditary Brain Aneurysm Support is proud to launch the Patient and Family Advisory Panel (PFAP), a new voluntary group bringing together the voices of people and families affected by brain aneurysms to help shape the future of our work.

The PFAP is made up of people with lived experience, including those living with hereditary or sporadic brain aneurysms, carers, and bereaved relatives who want to use their experience to make a difference. Members will share honest feedback, highlight unmet needs, and advise on how we communicate, support, and advocate for our community.

The panel will meet virtually up to four times a year, with flexible involvement between meetings. Together, we’ll ensure that the real-world experiences, priorities, and needs of patients and families are reflected across everything we do, from research and resources to awareness and policy work.

If you’re passionate about improving understanding and support for people affected by brain aneurysms, we’d love to hear from you. We’re looking for members of our community to come forward and apply. We’ll be launching in early 2026.

🕐 Time commitment: Around 1–2 hours per month

💻 Format: Four online meetings and flexible contributions

💬 Who can apply: Anyone affected by hereditary or sporadic brain aneurysms, including carers and bereaved family members

To express your interest, please email admin@hbasupport.org for an Expression of Interest form.

Together, we can make sure that the patient voice leads the conversation, and that every decision at HBAS stays grounded in lived experience.

Resources and support

Visit our support page for free resources and patient stories from our community.

Free resources