After serious reflection, the ARSACS Foundation is of the view that there is a need for an overall ARSACS patient registry. Such registry will be on an international basis and will include individuals diagnosed with ARSACS regardless of their country of residence. In addition to being an an essential tool to researchers, a patient registry will provide an idea of the market size which the Foundation believes is a crucial element when discussing drug development possibilities with pharmaceutical companies.
If you or a family member are affected with ARSACS, you will be invited to register. Your registration will contribute to the development of treatments for the disorder. Stay tuned for further details.