Persons with ARSACS

ARSACS International Patient Registry

Invitation to join the ARSACS International Patient Registry if you or a family member has received a diagnostic confirming that the person has ARSACS. This invitation stands even if you have already joined 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.

Registre international des patients ARSACS

Registro internazionale dei pazienti ARSACS

Registro Internacional de Pacientes 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.

Your voice is very important. Make your voice heard by participating in ARSACS research. 



The Ataxia Charlevoix-Saguenay Foundation is one of the 3 patient advocacy organisations participating in the PROgression chart of SPAstic ataXias (PROSPAX) research project. PROPSPAX, a 3 year project launched in September 2020, is a novel collaborative effort between several neurologists across Canada and Europe. 
It is an unique opportunity for patients to have their voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to a person living with the condition. The PROSPAX project will focus on two conditions – ARSACS and SPG7. There is a patient survey currently under development and your participation in the survey is crucial. Stay tuned. 


The Foundation is pleased to represent  the ARSACS patients on the research project “Designing a toolbox of paradigmatic treatments for a targeted molecular medicine approach to autosomal-recessive ataxias”. The project has received funding from the European Union’s Horizon 2020 research and innovation programme under the European Joint Program Rare Disease. 

The specific objective is the pre-clinical-research to develop effective therapies for rare diseases. It aims at designing and testing new complementary treatment strategies, including both repurposed and newly identified molecules, as well as gene therapies in two exemplary multisystemic flagship ARCAS: Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) and COQ8A-ataxia (ARCA2). It is a 3 year project.

Preclinical and clinical trials

 The Foundation is ready to conduct preclinical and clinical trials. It has the expertise and the tools available and is always  looking at opportunities to do clinical trials. However,  the participation of ARSACS patients is crucial to conduct such trials. 

Research that heals so there is hope

The Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).

Progress has been made over the years in identifying the source of the disorder.  Your support is crucial to continue funding high potential projects as well as a clinical trial.

Connect with the ARSACS community online

Stay tuned on the latest news and development. Join the ARSACS community via the different social media Facebook, Twitter, RareConnect.


RareConnect is an Online network of rare disease communities that brings together patients, families and groups. ARSACS is one community.