There is no global CAA patient association yet. However, the carriers of the hereditary Dutch CAA variant have joined in the HCHWA-D Association: www.hchwa-d.nl
You can contact the telephone consultation (+31 (0)622062560 ) of the HCHWA-d Care Desk every Wednesday morning from 9:30 am to 12:00 pm. This Care Desk advises you on finding the right help/support and helps you along the right path.
You can also email your questions to the Care Desk. The email is checked daily: firstname.lastname@example.org