Introducing Hereditary Brain Aneurysm Support
Brain aneurysms (intracranial or cerebral aneurysm) affect 1 in 50 people, that’s 1.5 million people in the UK. Most aneurysms are sporadic, meaning they are random but data suggest as many as 16% could be hereditary, meaning they run through families,
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Our charity was founded in 2021 by a patient who wanted to shine a light on this life changing, but treatable rare condition that can run through some families. After her difficult and tragic family’s journey, with limited access to reliable and balanced information, our founder wanted to build a charity that fill the knowledge and support gaps.
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Hereditary Brain Aneurysm Support is committed to building a supportive community and providing accessible information and to help patients and families through their diagnostic and treatment journeys.
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We want to support families, and help change their stories from devastation and fear to survival and hope.
Our Vision
We would like to see a world where Familial Brain Aneurysms are recognised by the healthcare, research and wider community as a rare condition with tailored management and screening pathways, guided by the patient experience.
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In parallel, in the next decade, we hope to see a rounded understanding of the genetic foundation of the disease that influences and unlocks treatments, screening options and further therapeutic discoveries, and patients and families supported through their journeys.
How we began: Rebecca's Story
Rebecca launched HBA Support in 2022. After losing her mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm. Discovering the lack of balanced and accessible information available, Rebecca founded HBA Support to improve support for future patients and their families.
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Find out more about Rebecca and read Rebecca's story
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“Having lost family to aneurysms, including my mother and grandmother to brain aneurysms, and having undergone treatment for a brain aneurysm myself I realised there was a real lack of helpful and reliable information – and I knew this was an issue that others must be facing too.
I set up HBA to support and inform people living with familial brain aneurysms and raise awareness of the condition as a rare disease, representing the lived experience and improving and saving lives."
Rebecca Middleton - Founder and CEO
Hear Rebecca talk more about her story, the development of HBA Support and her role as part of a patient panel with Genomics England on its G Word Podcast: The G Word podcast
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Rebecca also appeared on BBC Radio 4’s Woman’s Hour, sharing her personal story: Listen to Rebecca on Woman's Hour
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You can also read more about Rebecca's Genomics journey here
How we're governed
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HBA Support is a charity, registered in the UK. We are committed to open and transparent practice and are governed by a Board of Trustees. Steered by our dedicated Trustees, our small core executive team helps to deliver against our strategic priorities and supports our community’s needs.
To help more patients and families, we need more volunteers. If you’re interested in helping our charity, please get in touch to find out how you could help. We have opportunities to suit all experiences and time available.
Find out more
Find out more about our Trustees, our team and how to get involved.
