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.
13th October 2025
BE PART OF THE FUTURE OF RARE DISEASE INNOVATION
Join CamRARE for their #RAREsummit25 on 6 Nov as they mark 10 years of progress.
The summit will host a diverse line-up of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
One of this year’s featured talks will come from Keep Me Breathing, a charity leading a ground-breaking global collaboration to transform care for those with CCHS (Congenital Central Hypoventilation Syndrome).
Read about the speakers, view the full agenda and secure your tickets here: www.camraredisease.org/raresummit25/
6th October 2025
CamRARE’s RAREsummit25 agenda is out!
After months of research, creative planning, and inspiring conversations, the team has curated a truly unique programme for this year’s summit.
You can look forward to:
- World-class speakers, panel discussions, and interactive workshops
- Cutting-edge posters and exhibitors showcasing the latest innovations
- A focus on co-creation and patient-driven insights, bringing together the whole RARE community — from patients and advocates to researchers, clinicians, scientists, and innovators
The agenda reflects the diverse voices and whole-person, whole-community approach that makes RAREsummit such a special gathering.
👉 https://www.camraredisease.org/raresummit25-programme/
With just one month to go until 6 November, now is the time to secure your place!
Don’t forget to book your dinner ticket too — the perfect chance to continue the conversations and connections into the evening.
CamRARE can’t wait to welcome you! 💜
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...
29th September 2025
Who might you bump into at CamRARE's #RAREsummit25? 👋
Researchers, clinicians, biopharma, tech innovators, patient groups and people with lived experience of rare conditions. It’s a chance to bring the whole community together in one space.
There’ll be lots of opportunities to network — whether that’s over coffee, at exhibition stands or posters, during breakout sessions, in the informal meeting booths, or just chatting on the go.
Come along to make new connections (or catch up with familiar faces!) and be part of the conversations shaping the future of rare diseases.
29th September 2025
Could it be your charity Christmas card?
Each year Gene People sends Christmas cards to stakeholders and we use those produced by one of our partners. We need to order about 30 cards and to have them by late October. If your charity sells Christmas cards and would like to be considered please email anita.lowe@genepeople.org.uk by Wednesday 15th October.
22nd September 2025
CamRARE #RAREsummit25
As the sun sets on #RAREsummit25, an inspiring day of bold ideas and promising connections, CamRARE invites you to finish the day in style, gathering in celebration for a networking dinner.
Raise a glass to 10 years of CamRARE — a decade of driving change, championing collaboration, and giving voice to the rare disease community.
Enjoy a delicious three-course fine dining experience at Hinxton Hall, on the Wellcome Genome Campus, with a glass of wine or a soft drink on arrival and an opportunity to keep the conversations flowing!
Let’s toast to the past, the present, and the future we’re building together.
For more information about what’s in store throughout the day and to get your tickets for the summit and the dinner, visit the CamRARE website: www.camraredisease.org/raresummit25/
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.