It is difficult to know how many people in the U.S. have ARSACS because of its rarity, but, as genetic testing becomes a more widely used diagnostic tool, more and more people are getting diagnosed. Sometimes this occurs after being misdiagnosed for years with other conditions.
The ARSACS Foundation based in Canada is an excellent resource. There you can find a patient registry, information about ongoing research studies, and events related to ARSACS. There are also links to research studies and other informational resources that you may find helpful.
Visit ARSACS.com
There are many ways that you can get involved! You can reach out to us in the Contact Us section and tell us your story so we can add you to our Faces of ARSACS section. Supporting research endeavors at the Krogan Lab by sharing the link to this site is a great way to support ARSACS research. You can also donate directly to the ARSACS Foundation in Canada.
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