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
Special invitation to individuals affected with ARSACS, their caregivers and health professionals to a free online presentation on November 5th, 2020. Dr. Gentil will present in layman’s terms his research project « Research on Gene and Replacement Therapies to Treat ARSACS». Register in advance.
Note: The same conference will be also in French on November 19th (see the French site to register to the French presentation). A video of the presentation will be available on the Foundation’s website.
An excellent source of information on ARSACS published in the GeneReviews.
GeneReviews is an online database containing peer-reviewed articles that describe specific diseases. It was established in 1997 by the University of Washington in the US.
“Comment le patient peut-il, du diagnostic à l’innovation, faciliter son odyssée thérapeutique?” Invitation to all. Note that the free visioconference, organized by the Centre de recherche Centre Hospitalier Université de Montréal and les Hospices Civils de Lyon, is in French only and will be held on November 4, 2020. Several guest speakers will share their experience. For more information concerning the program and how to register click on Program . Register now.
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.
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.