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.
CADASIL: what do we know and where do we go next?
We held an afternoon of talks for CADASIL patients, families and carers on 30th June 2017. We were amazed and delighted to have over 100 people (and 1 dog!) in attendance. Find out more about it here.
We have set-up a tele-medicine service for our CADASIL patients. Tele-medicine allows for patients to have
their follow-up consultation with Professor Markus using Skype (a video-call service), rather than coming in to
the clinic at Addenbrooke's hospital - what is a very long journey for some of patients.
The project is being funded for two years by The Evelyn Trust. We are very grateful for their support in this project.
We hope that the service will prove to be useful to patients, and be made part of usual NHS care.
Please click here for more information on tele-medicine.