Thank you to the individuals who have responded to the email sent requesting to confirm or update their data in the ARSACS Patient Registry. If you did not have a chance to respond yet, please send an email to firstname.lastname@example.org to confirm or update your data. It would be greatly appreciated. By being registered, you will be informed of any major developments and the possibilities of clinical trials. In addition, this registry builds an international network with all the positive impacts i.e. creating greater awareness of the disease, increasing research funding opportunities and generating interest from researchers and pharmaceutical companies.
Furthermore, if you or a family member has received an ARSACS diagnostic and are not registered, you are invited to do so. It is easy and simple. Go to https://www.arsacs.com/registry/