As Brain Aneurysm Awareness Month unfolds, we at HBA Support are inspired by this year’s theme, "Hope on the Horizon." This theme reflects our commitment to fostering hope through innovative research, community collaboration, and the advancement of patient care.
We understand first-hand the immense worry and concern that families face when confronted with the reality of brain aneurysms. It’s a journey filled with uncertainty, but it’s one that we do not have to face alone. This year, more than ever, we are dedicated to bringing hope and light through our research and support initiatives.
Our ongoing projects aim to improve the patient experience and clinical pathways for those affected by brain aneurysms. Here's a look at our current initiatives, how they are bringing hope to patients and families - and how you can help us further our research initiatives too.
Our Projects: Bringing Hope to Life
1. Improving Patient Information and Support – Medtronic Project
With the generous support of Medtronic, a global leader in healthcare technology, and the expertise of Mearns & Pike, a specialist medical communications agency, we are developing a new patient booklet.
This booklet will be a comprehensive guide written with the input of our community — including patients, those living with hereditary or familial brain aneurysms, NHS clinicians, and neuro specialists.
Our goal is to create an accessible resource that offers essential information, practical tips, and advice for individuals diagnosed with or suspected of having familial brain aneurysms. This collaborative effort ensures the guide will be a valuable tool for patients and healthcare providers across the country, empowering them with knowledge and support. If you are interested in contributing to this project, we would love to hear from you at support@hbasupport.org.
2. Improving the Patient Journey – Costello Research Project
In partnership with Costello Medical, we are undertaking a comprehensive study to examine the current patient pathways for those with suspected familial brain aneurysm syndrome. This project aims to identify gaps and inconsistencies in practices across the UK’s neurocentres.
By gathering insights from clinicians and eventually patients and their families, we hope to understand better the challenges faced during the diagnostic and treatment processes. The project is still in its early days and we’ll keep you updated with how this progresses and how you could help by sharing your valuable experience.
3. Supporting the Experts – ROAR Studies
We are proud to continue our collaboration with Professor Butler, a leading Consultant Neurosurgeon and Chief Investigator of the Risk of Aneurysm Rupture (ROAR) Study. This research aims to predict which brain aneurysms are most at risk of rupturing, providing critical insights for patients and healthcare providers.
The ROAR Study will analyse data from approximately 20,000 anonymised medical records from UK neurosurgical units, focusing on patients with unruptured aneurysms and their outcomes. The results will help future patients assess their risk and decide on the best management strategies, bringing hope through personalised care and prevention. We are excited to support this ground-breaking research and will provide more details as the study progresses.
4. Supporting Future Experts and Researchers
We believe in investing in and supporting future NHS clinicians. We are absolutely thrilled to support two outstanding students from Cardiff University, Lily George and Olivia Sharpe, in their Master of Science Genetic Counselling studies. They are each conducting their own research on the patient experience of the familial disease.
They’re eager to speak with individuals affected by familial aneurysms to learn more about their experiences and incorporate these insights into their education and future practice.
If you would like to share your story and contribute to the training of future genetic counsellors, please get in touch. Your participation can help shape the future of care and bring hope to many. Contact us at support@hbasupport.org to get involved.
Join Us in Creating Hope on the Horizon
By sharing your experiences and participating in our research initiatives, you can help us make a real difference in the lives of those affected by brain aneurysms. Together, we can enhance patient care, improve clinical pathways, and bring hope to everyone in our community.
If you want to contribute in any way, please reach out. Your story matters, and your involvement can help bring about change and hope for all those impacted by brain aneurysms.
If you would like to contribute in any way, please reach out. Your story matters, and your involvement can help bring about change and hope for all those impacted by brain aneurysms. Lets work together to make hope a reality.
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