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"I have 75 percent of a brain left," she says. "But I think my brain is better now than it ever was before my stroke. We have to make the most of what we have got, rather than worry about what we haven't. If I can help just one person feel less alone, then it's worth it."

“Scan‑anxiety” is real. Wherever you are in your journey - newly diagnosed with a brain aneurysm, years into monitoring, post‑treatment, or supporting someone you love - your feelings around scan time are valid. They are shared. And you are not alone.

Our open letter has now been delivered directly to the Secretary of State for Health and Social Care, via supporting MPs, and into the hands of key decision makers across DHSC and NHS England — ensuring our community’s voice is heard clearly, loudly, and unavoidably by those with the power to act.

After nearly two years research and listening to our community, we’re proud to share with you our report “From Silent Risk To Real Recognition: Ending the neglect of hereditary brain aneurysms and transforming care." The report reveals fragmented care pathways, lack of psychosocial support, inconsistent access to screening, and hundreds of preventable ruptures every year.