International ARSACS patient registry
EnglishRegistre international des patients ARSACS
FrancaisRegistro internazionale dei pazienti ARSACS
ItalianoRegistro internacional de pacientes ARSACS
Español"Dîner des Producteurs"
Invitation to the annual fundraiser for ARSACS research
To ARSACS patients to join in
two international studies to identify biomarkers,
essential data to initiate treatment for ARSACS
Read MoreSeveral research projects
According to Dr. Luc J. Hébert’s interim report , “it is becoming increasingly clear that in patients with ARSACS, the presence of inappropriate knee cocontractions is a major factor in mobility restrictions.” Dr. Hébert is the researcher responsible for the project “Caractérisation des déficiences musculaires associées aux difficultés à la marche et aux transferts chez des personnes atteintes d’ARSACS ; de la cellule à la fonction” Note: The interim report is available in French only.
Congratulations and thank you to Katherine Samson and her team for this great success! $25,000 raised by selling 5,000 “Ça va bien aller” stickers. A special thank you to Mrs. Louise Lajoie, real estate agent at Remax Saguenay-Lac-Saint-Jean, who played a key role in this fundraising activity.
The Foundation, a financial partner with the Canadian Institutes of Health Research, is pleased to confirm that the “European Joint Programme on Rare Diseases 2020” (EJP-RD JTC2020)competition is moving on according to its original timelines even with the current COVID-19 pandemic.
The Foundation is proud to announce that it will continue to work with the Canadian Institutes of Health Research and the European Union as part of the European Joint Programme on Rare Diseases 2020. The Foundation will fund $225,000 over a 3-year period for projects on Ataxia Charlevoix-Saguenay. The Canadian investment will be used to fund the participation of Canadian researchers in multinational research consortia in areas such as rare diseases.
If you or a family member has received an ARSACS diagnostic, you are invited to register. It is easy and simple.
The registry is available in 4 languages English, French Spanish and in Italian. This is a way for you to support the cause.