Start a support
group for patients or caregivers (see the links
page for examples).
to caregivers within your family.
and others about CADASIL.
Write to legislators
in support of funding for rare
diseases or other CADASIL-related issues.
Become an advocate
for CADASIL education and research. (The Alzheimer's Association has
created an Advocacy
Handbook with advice on becoming involved in public policy. Although
it was designed for Alzheimer's Disease advocacy, much of the information
on contacting legislators and speaking to the media would be relevant
to a CADASIL advocate as well. Adobe Acrobat Reader is needed to view
this brochure. If you don't have this program on your computer, you
can download it free here.)
and Aging Program
345 Blackstone Blvd.
Providence, RI 02906