International Consortium for Gene and Cell Therapy … we have a societal obligation to the rare-disease community to collaborate and build the infrastructure to meet it. With an international consortium in place, it is more likely that therapies will be established that help patients not only in the developed world...
Following correspondence with Health Canada and Santhera, we present the results of the negotiated agreement: Santhera formally commits to offering, and thus delivering, Catena to Canadian patients who are approved by Health Canada’s Special Access Programme (SAP). The price will remain about the same. 2. Santhera can in no way...
Following the decision of Health Canada to withdraw the drug Catena® (idebenone) in Canada, CAFA has prepared two documents to communicate to Health Canada the reaction of people with Friedreich’s ataxia to this decision and its support of the demand to make Catena® (Idebenone) available through a special access program....
Santhera Pharmaceuticals announced the voluntary withdrawal of Catena® from the Canadian market. This decision follows review of additional data from clinical trials in patients with Friedreich’s Ataxia, and subsequent consultation with Health Canada. You can read the entire press release on Santhera’s website.
Helene Benoit lives in Kingsey Falls and has Freidreich’s ataxia. She must use a wheelchair and is assisted by her guide dog. Since she began practicing yoga in 2005, she has not ceased to be amazed by the numerous benefits it has brought her. Afflicted with severe scoliosis, she believes...
I’m a young 23 year old woman suffering from Friedreich’s ataxia (FA). I learned that I had this illness when I was nine, but I learned to live with it without feeling too sorry for myself and continuing to live like most teenagers. At first I didn’t really understand what...
Let me introduce myself, I am 46 years old, the mother of two youths, I work part-time in a library, I do a lot of stretching exercises, yoga, aqua gym. I do volunteer work in a reception centre, I devour books through being so conditioned to my job, and with...
