The CORD needs your help to get the Orphan Drug Regulatory Framework approved now. We quote its letter bellow. “Dear friend of CORD, As you know, we’ve been working hard on the Orphan Drug Regulatory Framework and we’re very close. Now we only need you to take two more steps...
Ms. Nahya Awada, student at University of Liverpool undergoing her Master’s Degree in Clinical Research, invites you to participate in a survey “Knowledge, attitudes, and perceptions of individuals with familial history of genetic diseases regarding implications of personalized medicine to personal health in Canada”. This is a voluntary and anonymous...
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...
