Welcome to our Network News page. Scroll down for updates and information about research, resources, events, links, and news from VVN organisations.
6th February 2026
Cavernoma Alliance UK secure funding for gene therapy research
Cavernoma Alliance UK is delighted to announce that it has secured just over £47,000 in continuation funding to keep their UK gene therapy research going for another year. This builds on the first year of funding and means the project can continue at the UCL EGA Institute for Women’s Health, one of the world’s leading institutes for scientific research.
The research is being led by Professor Rajvinder Karda, alongside Dr Ellie Chilcott and colleagues, and focuses on developing a novel gene therapy approach for cerebral cavernous malformations.
This is early-stage, pre-clinical research, and it's likely that it will be 10+ years before any gene therapy could reach clinical trials. But securing continued funding at this stage is a huge milestone, and real progress is being made.
This year’s funding is being provided by CAUK, supported by the extraordinary generosity of a philanthropist with a personal connection to the CAUK community. CAUK also wants to warmly thank Cavernoma Ireland, whose support also helped fund the first stage of this work.
6th February 2026
HBA Support and Cavernoma Alliance UK are spreading the VVN Message
Our Vascular Voice Network founder Rebecca Middleton (pictured left), also CEO and founder of Hereditary Brain Aneurysm Support, joined forces with representatives of one of our core network organisations, Cavernoma Alliance UK, to spread the word about VVN at the British Neurovascular Group Meeting 2026 held on the 5th and 6th of February.
Displaying VVN posters on their stands and chatting to meeting attendees about the potential benefits of our Network for organisations, clinicians, and (most importantly) vascular patients, HBA Support and CAUK represented what we can achieve when we work as a team. We really are showing that we're Stronger Together for Vascular Health!
20th January 2026
The Aortic Dissection Charitable Trust publishes new patient resources
Exercise, blood pressure management, travel insurance, genetic testing and the psychological impact are just some of the key topics covered in the TADCT patient resources. Featuring practical guides and candid conversations with patients and family members.
Shaped by patient experience, these resources answer the most commonly asked questions from those living with aortic dissection tadct.org/patients
20th January 2026
Welcoming International Heart Spasms Alliance to the network!
The VVN is very pleased to welcome on board the IHSA as our latest network organisation.
IHSA is currently carrying out an ANOCA patient survey in collaboration with Prof John Beltrame, University Adelaide, Australia, the‘ Your Heart Speaks’ survey.
Abstracts of the first survey results have been presented at the Cardiac society of Australia and New Zealand’s 2025 conference, the European Society of Cardiology’s 2025 Congress, and will be presented to the upcoming American College of Cardiology’s March 2026 conference.
The survey can be completed at https://www.internationalheartspasmsalliance.org/surveys/
20th January 2026
The Marfan Trust is breaking new ground with survey results
The Marfan Trust has emerged from a state-of-the-nation survey, the first of its kind and one that was very popularly completed. The survey identifies regional disparities in healthcare provision and spotlights areas for improvement, helping to shape the future of care for people with Marfan and Loeys-Dietz syndromes. The findings will underpin the Trust’s three-year strategy and will inform the development of our services.
12th January 2026
New data provides insights into how ACTA2 mutations may affect patients with MSMDS
A new research article has just been published that provides the most detailed analysis to date of how ACTA2 mutations affect the gastrointestinal tract in patients with MSMDS.
Using a clinically relevant ACTA2 mouse model, this study shows that gastrointestinal symptoms in MSMDS are driven by profound smooth muscle dysfunction in the intestine, while the enteric nervous system is largely preserved. These findings clarify the biological cause of gut motility problems in patients and lay important groundwork for future precision and genome-editing–based therapies.
To view the publication please visit https://insight.jci.org/articles/view/190469
9th January 2026
UK Rare Diseases Framework extended for one year!
Genetic Alliance UK are delighted to share the fantastic news that health ministers across the UK have agreed to extend the UK Rare Diseases Framework by one year. This is a vital step and ensures continuity in rare conditions policy for our community.
9th January 2026
Welcome to the new UK Vascular Research PPIE Registry website 🚀
The UK Vascular Research Patient and Public Involvement and Engagement (PPIE) Registry are delighted to introduce its new website, which launched last month.
Created and designed with lots of ideas and feedback from the Registry participants, the website is intended to be a central hub for patients and public around the UK to sign up and get involved in vascular research PPIE.
With pages for opportunities to participate in PPI for study applications and wider vascular projects, news and research updates, dissemination of vascular study results, and information about current studies recruiting vascular patients in the UK, it's going to be lively!
Please visit us at www.ppivasc.uk and see how vascular patients and the public are working together to shape research.
9th January 2026
Join the rare condition community online to recognise Rare Disease Day!
Genetic Alliance UK are hosting a joint nation online event to bring together the rare condition community across the UK to recognise Rare Disease Day. At the event we will hear updates from key policy makers impacting people with rare conditions.
The event is taking place on Thursday 5 March, 10:00-12:00 via Zoom.
Register via Eventbrite to join the online Rare Disease Day event.
19th November 2025
Help Shape the Future of Heart Care!
Are you interested in heart health and want to make a difference in your life and others’? Now’s your chance!
The BHF Clinical Research Collaborative (CRC) are building the UK’s first national cardiovascular research database – a way for patients, families, carers, and researchers to work together, tailoring heart care with and for those living with, or at risk of developing heart conditions.
How does it work?
Think of it like this:
Your experience → Helps shape research → Improves care for you and others
Your feedback can inform what questions researchers ask, how studies are designed, and how results are shared. It’s not just participation - it’s collaboration.
No research background is needed – just your lived experience and a motivation to make a difference.
Sign up here. It takes less than 10 minutes. After that, it’s up to you - only get involved in the opportunities that suit your time and interest.
Need further guidance? Check out this step-by-step guide.
15th October 2025
Registration Open! Gene People Leadership Symposium
Gene People, the genetic conditions support network, are delighted to announce that registration is now open for the Gene People Leadership Symposium 2026. This event is free to delegates from condition-specific support groups; there is a charge for industry. The topic is ‘Generating the Evidence.’
The Symposium will be held online on 5th February 2026.
Gene People are honoured that Kath Bainbridge, Head of Rare Disease and Emerging Therapies, Department of Health and Social Care will be chairing the event.
More speakers are being added so have a look at the agenda and register on the website.
2nd October 2025
🎉This October we’re celebrating 1 Year of the Vascular Voice Network 🎉
One year ago, the Vascular Voice Network was founded with a clear mission:
To improve collaboration, communication, and connection across charities, advocacy groups, clinicians, and research teams working in the vascular space.
In just 12 months, we’ve seen what’s possible when people and organisations come together with a shared purpose.
We're:
🔹 Building stronger relationships across the vascular charity, clinical and policy sectors
🔹 Creating a platform for open dialogue and mutual support
🔹 Working to identify shared challenges — and opportunities to solve them together
🔹 Encouraging more unified messaging and resource-sharing across the vascular community
The Vascular Voice Network isn’t about any one organisation or individual — it’s about all of us working better, together, for the people we support.
A heartfelt thank you to everyone who’s been part of this journey so far. Your openness, generosity, and willingness to collaborate are what make this network so special.
Here’s to year two — and to even deeper connections, greater impact, and a stronger voice for vascular health. 💙
1st October 2025
Aortic Dissection Awareness Day 2025
September 2025 marked one of the most impactful Aortic Disease Awareness Months so far. Across the UK and Ireland, patients, families, clinicians, and supporters came together with renewed energy and determination. The month brought both wider awareness and tangible improvements in care, research and community support. This year has set a new standard for how we engage the public, professionals and policymakers to improve outcomes for those living with or at risk of aortic dissection.
To read more about our advances in research, patient support, clinical education, and community led awareness programmes please visit https://aorticdissectioncharitabletrust.org/aortic-dissectio...
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!
12th September 2025
Vascular Voice Network launches to unite UK organisations across the vascular health landscape
Vascular disease is responsible for 40 percent of all deaths in the UK, yet remains under-recognised and underserved in national strategy. Rebecca Middleton, CEO of the charity HBA Support, recognised that a new ‘strength in numbers’ approach is needed and has now founded and launched the new Vascular Voice Network.
“The Vascular Voice Network was born out of frustration. Too many organisations across vascular health have been working in isolation, facing similar challenges but without the mechanisms to share learning or drive collective change,” said Rebecca. “This is about coming together with purpose and collaborating where it makes sense, we can have greater influence, and improve outcomes for the communities we serve.
Click here to read the full article at Rare Revolution Magazine.
21st July 2025
Vascular Voice Network – Statement on the Fit for the Future: 10 Year Health Plan for England
The National Quality Board is developing frameworks for high-impact conditions, starting with cardiovascular disease. The plan commits to a modern service framework for cardiovascular disease, which reflects the Government’s commitment to reducing premature deaths from heart disease and stroke in England by 25% over the next decade. This framework is the backbone for how care will be structured, funded, and delivered across England.
The ‘Vascular Voice Network’ - the UK-first, cross-condition initiative designed to connect patients, charities, clinicians, researchers, and system leaders around the shared goal of improving care and outcomes for people with vascular conditions – welcomes this strategic priority...
Click here to read the full statement on LinkedIn.