Resources for Patients

Across the world, there is a network of patients, families, and researchers who have come together to support one another in our effort to develop novel treatments for ARSACS. Below are a variety of important resources for patients to access:

AFA

Action for ARSACS Foundation USA (AFA) operates as a “sister foundation” to the ARSACS Foundation. AFA provides personalized support to newly diagnosed families. We strive to share the message that ARSACS patients are not alone, and enormous strides are being made in scientific research, including potential gene therapy for ARSACS. AFA attends national and international rare disease conferences and works diligently to fundraise for cutting edge technologies that will best serve the ARSACS community.

The ARSACS Foundation

The ARSACS Foundation, based in Montreal Canada, serves as the information hub for ARSACS patients around the world. The Foundation hosts a patient registry, provides updates regarding current research endeavors, and posts all relevant research publications and related topics. It also provides annual grant funding to ARSACS researchers around the world. Please visit arsacs.com.

National Ataxia Foundation

The National Ataxia Foundation (NAF) provides information, educational meetings, and an endless variety of other support mechanisms for ataxia patients and their caregivers. NAF is a large organization based in the United States, and AFA  will highlight ARSACS within NAF for increased visibility. Please visit ataxia.org.

Other resources

There are a variety of ataxia-centric organizations based around the world that also assist ARSACS patients. AFA can help you find out what resources may be available in your local area.