16th September 2025
Podcast Launch!
HBA Support are proud to announce that we're launching a new podcast called ‘Brain Aneurysms and Beyond’- the first of its kind in the UK, focused entirely on brain aneurysms and the people affected by them, for education, insight and community.
By sharing the latest research alongside real-life stories, Brain Aneurysms & Beyond will help to raise awareness and understanding of brain aneurysms, risk factors, prevention and treatments, increasing visibility across the UK (and potentially Europe). It will not only support clinicians with the latest insights on research, treatments and care but also amplify patient voices and reduce stigma around the disease, connecting families and a community that previously felt alone.
We want to start conversations, to create a community, empower patients, and to save lives.
It will be available on all podcast listening platforms and we will be launching very soon! Stay tuned to our social channels for more information.
16th September 2025
The Aortic Dissection Charitable Trust are delighted to share that Imperial College Healthcare NHS Trust and Liverpool Heart & Chest Hospital NHS Foundation Trust have been awarded funding to appoint Aortic Advanced Practitioners. Specialist nurses who will play a vital role in supporting patients and families through lifelong care.
This is the first time roles like this have been funded in this way, and it marks a major step forward in our mission to ensure consistent, specialist care for everyone affected by aortic dissection.
These newly funded positions are just the beginning. We’re working towards placing a specialist nurse in every centre treating aortic dissection, and we’ll be opening the next round of funding later this year.
Read how we’re building lasting change, and how your support made it possible.
16th September 2025
Back in June ACTA2 Alliance shared how researchers were advancing the work on gene editing for MSMDS, ACTA2 R179H.
We can now celebrate that this effort has been peer-reviewed and published in Nature. A huge milestone for our community!
Using a custom-built CRISPR–Cas9 base editor, researchers corrected the ACTA2 mutation in a mouse model, prolonging survival and rescuing disease features in the brain, the aorta, and the blood vessels. You can access the full article here: https://bit.ly/gene_therapy_R179H
This is more than a step forward for MSMDS. It’s a proof of concept that our rare disease can lead the way to treatments for other severe vascular diseases, like Moyamoya.
We feel proud of how far this journey has come, grateful to the incredible researchers and clinicians who make this possible, and hopeful because step by step we are getting closer to therapies our children desperately need.
To the researchers and clinicians working tirelessly on this: THANK YOU.
16th September 2025
New Patient Guides
At HBA Support, we’ve heard that people feel lost and alone at the start of their screening and diagnosis journey. Working with patient partners, Neurosurgeons, Interventional Neuroradiologists, and neuro nurses, we’ve created a patient guide for people newly diagnosed with a brain aneurysm that covers the areas that are important to you.
We will be sending out an exclusive preview for our newsletter subscribers very soon, please keep checking you emails!
We’re also launching a new Lifestyle Guide to support the practical everyday questions you might have about living with an unruptured aneurysm or post rupture. Downloadable now!