Since CADASIL is a rare disease and has only recently become well known, information for patients and family members is still quite sparse. To our knowledge there is no book of advice for lay people. Websites on the internet can be of inconsistent quality, but some of them are helpful for patients and families dealing with the disease. We recommend the following websites:
Groups Involved in CADASIL Research and Patient AdvocacyCureCADASIL Association
United Leukodystrophy Foundation
Click "Types of Leukodystrophy" for information about CADASIL.
CADASIL Foundation (Together We Have Hope Non-Profit Organization)
A patient advocacy group based in the U.S.
CADASIL Information Site
A patient advocacy group based in the U.K
Background Information on CADASILGenetics Home Reference for CADASIL
U.S. National Library of Medicine website on CADASIL with many useful links
CADASIL BrochureThe brochure contains some of the information on this subsite. (Note: the page order in this document is designed to print in booklet form, so the pages will appear out of order on the computer screen.)
CADASIL Family Registry