CADASIL Family Forum (since 2007)
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Posts: 251

If you have not had the opportunity or if you wish to update the CADASIL registry?

Please go to our secure website at:

We respect your privacy and all personal information provided to us is kept strictly confidential!

We will be glad to mail you a new welcome packet, which includes a color CADASIL brochure, what is CADASIL card, and an emergency reference card, which explains what medicines you should avoid. Once you have updated the registry, you will receive an e-mail confirmation welcoming you.

The CADASIL Together We Have Hope Non-Profit website at  been updated and much more has been added. Watch the video from Professor Chabriat, Researcher from Paris, France who is also on our international scientific advisory committee explaining in non-technical language about CADASIL. Our website now has an index at the bottom of the webpage as a reference.

We have a new face book page at!/pages/Cadasil-Together-We-Have-Hope-Cadasil-A-Rare-Genetic-Disease/438410742916998

If you are a CADASIL caregiver or your love one is there is now a CADASIL Caregiver Unite Forum the link to this forum is:

We hope you and your family are well and please free to contact us at anytime as we are here for you.


Billie, Debby, Kalletta, and Rose

CTWHH Board of Directors

If you wish to contact us:

E-mail us at
512-255-0209 or 1-877-519-HOPE

Billie Duncan-Smith

Posts: 3
Could you please confirm if I have registered or not. I received a welcome package already. Thank you

Amanda Radul

Posts: 154
Yes, you did sign the registry.

Please remember you are not alone!

CADASIL Together We Have Hope NonProfit Organization
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