We are happy to announce that in January 2014 the Canadian Association for Familial Ataxias (CAFA) – Claude St-Jean Foundation became Ataxia Canada – Claude St-Jean Foundation. We will continue to use both names for a period while the new name gradually replaces the old one. The association’s representative and...

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...