Cadasil Support UK - Raising Awareness

13/03/2026

We just like to give a shout out of thanks to Nigel Onley from the BRETHEREN OF WILAVESTONE MASONIC LODGE IN NORTHAMPTONSHIRE.

“Thank you to you and all involved for your generous donation of £600 and for standing with us. Your support means everything.

28/02/2026

🌍💜 Today we stand with the 300 million people living with a rare disease. We are united with their families, friends, caregivers, advocates, and the medical professionals, researchers and organisations that working tirelessly to build a more equitable future for our community.

Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us.

Thank you to everyone who’s taken part, whether you’ve lit up your home, shared your story, joined an event, or supported someone you love. By standing together we’re proving that our community is strong, united, and truly more than anyone can imagine. ✨

👉 Learn more and discover ways you can still get involved: https://go.rarediseaseday.org/NEWS

25/02/2026

Join the community in coming together to raise awareness for Rare Disease Day 2026 at our Joint Nation online event.

Taking place on Thursday 5 March from 10.00 to 12.00, this event is a virtual reception bringing together civil service representatives from England, Scotland, Wales and Northern Ireland to provide updates on progress in the last year for rare conditions.

Excited to find out more and join? Register your place via the link in our bio.

23/02/2026

There are 3.5 million people living with a rare condition in the UK: almost half of all rare conditions are neurological. Everyone with a rare condition deserves fair and equitable care from the NHS, no matter how rare their condition is. Equitable care means addressing individual needs, not treating everyone the same.

For Rare Disease Day 2026, Genetic Alliance UK will be sharing factsheets and a report to amplify the views of people with rare conditions and shine a light on their lived experiences of inequity.

27/12/2025

Some positive results from the ‘cadasil in a dish’ study 🧬
Thanks to Alessandra for keeping us updated

Update: Progress on CADASIL Drug Screening 🧠🧪 Thanks to your incredible support, we have made significant progress in our CADASIL research over the past months.

23/12/2025

16/12/2025

There are more than 6,000 identified rare diseases, each with its own set of challenges, symptoms, and experiences. For many, there are few or no treatment options, highlighting how crucial research is in driving progress and hope.💡

Research expands our understanding, improves diagnosis, and fuels the discovery of therapies that can transform lives. It also connects communities, linking patients, families, and researchers to work toward a common goal: better care and outcomes for all.

💜 Equity for rare diseases means ensuring that everyone, everywhere, has the same opportunity to participate in and benefit from research.

👉 Learn More: https://go.rarediseaseday.org/equity

08/12/2025

‼ CADASIL 2026 MEETING IS NOW READY FOR ENROLLMENT - IN PERSON OR ONLINE ‼

PLEASE SIGN UP AND SHARE

Cambridge Stroke - Stroke Research Group in Clinical Neurosciences at the University of Cambridge

30/10/2025

Good News 💉

At the most recent 'Cadasil Online Mini Meeting', we had the pleasure of hearing from Natalia Owen, a PhD student based in the stroke research group at Addenbrooke's in Cambridge.

Natalia explained that she was working on identifying markers to predict the severity of the disease in patients. To do this, a UK familial small vessel disease study had been established, and over 200 blood samples had been collected. These samples were awaiting processing, but 20% of the funding still needed to be raised (with £16,000 already available).

We are pleased to share that the team at Addenbrooke's has secured a discounted quote for processing the blood samples, meaning all the necessary funding is now in place!

This is excellent news, and our sincere thanks go once again to the incredible team at Addenbrooke's Hospital in Cambridge. We are truly fortunate to have their support.

Link to latest Online mini meeting >>>

On the 25th September we held our third online mini-meeting! This session focused on research in CADASIL. PhD student Natalia Owen discussed her CADASIL PhD ...

20/10/2025

We would like to sincerely thank Ellie Beattie for recently running the Manchester Half Marathon. She raised an impressive £573 for Cadasil Support UK, and we are very grateful.

09/07/2025

Cadasil Support UK - Raising Awareness- Please act now- deadline 16 July

The right care at the right time can transform lives. But, as we know, people with neurological conditions are often unable to access the care they need.

Almost half of The Neurological Alliance's My Neuro Survey respondents said they do not feel supported by the health system.

CADASIL community- please spare a few minutes to sign the Alliance's open letter to the Secretary of State for Health and Social Care, Wes Streeting, to tell him to we need action, not words, to improve the lives of people living with neurological conditions.

Here is a link to the letter: https://bit.ly/ActForThe1in6

CADASIL Support UK is a proud member of The Neurological Alliance

June 2025: Act now for the 1 in 6 people living with a neurological condition. Dear Secretary of State,  Too many people affected by neurological conditions are still facing a reality where their experiences are not recognised and their needs are not met. In the latest My Neuro Survey...