With sad news because of Billie’s health issues, Steve's health and her family's health, the board of directors has decided to discontinue CADASIL Together We Have Hope after 16 years. Billie still will be a CADASIL patient advocate and always will be. She plans to open a website for CADASIL information. Please check out https://curecadasil.org/ another nonprofit in the USA. Thank you for your support and understanding over the years. Billie's email address is: billie.duncansmith@gmail.com 

All personal information provided to CTWHH is kept strictly confidential even when we have discontinued operations.


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What is CADASIL?

CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) is a rare genetic disease affecting the small blood vessels of the brain.  It leads to a poor irrigation of certain areas of the brain which causes symptoms that vary from person to person.   CADASIL affects just as many men as women.

This disease is caused by an anomaly (mutation) of one single gene, called Notch3, found on chromosome 19. This gene plays a part in the formation of the blood vessels and the way they work.  It's mutation has an impact on the movement of blood inside the brain. 
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ICD-10-CM I67.850 is a new dignosis code for CADASIL that became effective on October 1, 2018.

New Study Enroll Today
As of 6-25-22  

Great News - There is a new CADASIL study across the U.S.A   Please go to https://cadasil-consortium.org/ The nonprofit was honored to work with the medical professionals to establish the study.







Keep up to date with CADASIL News

Sign CureCADASIL registry at https://curecadasil.org/join-cadasil-registry This is a family CADASIL Registry which will keep you up to date information on CADASIL.






The information provided on this website is designed to complement, not replace the relationship between a patient and his/her own physician.



updated 06/27//2022