Welcome to the CADASIL website

 

Welcome to the CADASIL website; a resource for those diagnosed with CADASIL, their relatives and carers.  As CADASIL is a rare condition, little reliable information is available on the internet.  On this website we hope to be able to provide up-to-date and accurate information.  We hope that the website will expand over the coming months and years and would welcome input from patients and family members. In addition to providing useful information for CADASIL patients and relatives we also supply links to other websites where more information can be found.

 

The information on this website has been primarily provided by Professor Hugh Markus, Professor of Stroke Medicine at the University of Cambridge and Consultant Neurologist at Addenbrooke’s Hospital, Cambridge and by Glen Brice, Genetic Counsellor from the Clinical Genetics Department at St George's Hospital, London. Together, we have been involved in caring for CADASIL sufferers and their families for many years and have a wide range of experience in dealing with the problems associated with the condition.

 

As with any medical condition, we do rely on hearing the experiences of patients and family members in order to develop new services which better cater to the needs of those affected. If you have any suggestions for improvement to the website or new sections which you think we should add, please do contact us. Feedback or suggestions can be submitted here

 

 

News

Save the Date!

Cambridge CADASIL Mini Meeting - 18th November

 

After the success of our first online mini CADASIL meeting online in July we will be hosting our second mini-meeting on Monday 18th November from 5pm until 7pm (UK time). 

 

Due to popular request, the focus of this meeting will be cognition and psychological symptoms in CADASIL. We are pleased to announce that Dr. Alexa McDonald has kindly agreed to join us to speak on cognitive and psychological symptoms in CADASIL and how to manage them. Following her talk Dr McDonald will answer questions from the audience. Programme for the meeting is available here.

 

Please register for the meeting by 4pm on Friday 15th November 2024 here. Meeting link will be sent out on the morning of 18th November.

 

 

 

 

Cambridge CADASIL Mini Meeting - 18th July!

 

Due to popular request we held our first ever mini CADASIL meeting online on Thursday 18th July! 

At our first mini-meeting Professor Hugh Markus gave an overview into CADASIL and addressed some of the commonly asked questions from patients and families with CADASIL.

 

 

If you were unable to attend and would like to watch the recording of this event, it is available below.

 

 

 

 

CADASIL and COVID-19

We have had a number of enquiries on this topic by our patients and families. Here is the best guidance we have for CADASIL patients wondering how it affects them. Having the CADASIL gene does not mean you are at high risk if you are well and do not have symptoms.  However if you have neurological complications of CADASIL such as stroke, disability, or dementia then you are at high risk. 

The Association of British Neurologists has provided some advice for patients with neurological disease, which applies to CADASIL and can be accessed here. They will continue to update it on their website via this link.

 

If you have questions we will always do our best to reply via the info CADASIL email (info@cambridgestroke.com).

 

With best wishes and we hope you do stay safe

 

The Cambridge CADASIL team

 

 

Participation in research

We would like to take the opportunity to remind you that anyone who is interested in participating in our research (either as a CADASIL patient or as a healthy volunteer) would be very welcome to get in touch. If you would like to sign-up to be contacted about research then please contact: mmh64@medschl.cam.ac.uk. For non-research related queries please email info@cambridgestroke.com.