Invitation to join the ARSACS International Patient Registry if you or a family member has received a confirmed diagnosis of ARSACS. Participation is encouraged even if you are already enrolled in another patient registry.
The ARSACS International Patient Registry is a collection of basic information about individuals diagnosed with ARSACS regardless of their country of residence. Your participation in this registry will greatly contribute to the development of treatments for the disorder. The registry is to facilitate contact between ongoing researchers and patients who wish to be contacted about participating in clinical trials. In addition to being an essential tool to researchers, a patient registry will provide an idea of the market size and the potential for trial recruitment which are crucial elements when discussing drug development possibilities with pharmaceutical companies.
The research community needs you and this is a way for you to help finding a treatment.
Registration is voluntary. Participants may withdraw from the registry at any time or choose to stop receiving electronic communications from the Ataxia Charlevoix-Saguenay Foundation.
English
ARSACS International Patient Registry
Francais
Registre international des patients ARSACS
Italiano
Registro internazionale dei pazienti ARSACS
Español
Registro Internacional de Pacientes de ARSACS
You are not alone
If you have been diagnosed with ARSACS, you are not alone. Persons affected with ARSACS are found all over the word. According to the Foundation’s ARSACS International Patient Registry statistics, ARSACS is found in all continents.
Frequently Asked Questions
Your Participation in Research
Your voice matters. Make it heard by taking part in ARSACS research. The participation of patients is essential to advancing research and enabling future clinical trials
ARSACS Exercise Program at Home
The Ataxia Charlevoix- Saguenay Foundation and the GRIMN research team is pleased to introduce an exercise program tailored specifically for individuals affected by ARSACS. According to the medical community, an exercise program developed according to the person’s capabilities can improve the physical condition.
Before starting the program, it is crucial to undergo an assessment conducted by a qualified physiotherapist. The first part of the document provides the physiotherapist with the procedures for the evaluation and assignment of the initial level of difficulty of the exercises. The exercise program is divided into 3 areas (sitting balance, standing balance and sitting-standing transfer) with photos and videos.
The document will open in French but the reader can select the language on the right side of the screen (view the program either in French or English).
Connect with the ARSACS community online
Our online community provides a space to stay informed, share experiences, and connect with others who are working to raise awareness and support advancements in research and care. Whether you are living with ARSACS, caring for a loved one, supporting research, or simply interested in learning more, we invite you to join the conversation. Follow us on Facebook, X, and LinkedIn to receive regular updates and become part of a growing community dedicated to making a difference for those affected by ARSACS.