Rare Disease Day

28 February 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from more than 80 countries and regions worldwide are planning awareness-raising activities around the slogan Day-by-day, hand-in-hand.

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Funding the Development of a Mouse Model for the Research on Friedreich’s Ataxia

We are currently considering a new form of funding for Professor Tremblay’s project. Our goal is to develop a mouse model for the research on Friedreich’s Ataxia. The research project will soon be published in the American crowdfundig site CONSANO. Ataxia Canada will contribute equally to the amount collected. Access to...

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Survey: Canadian Plan Access to Drugs Rare Diseases

On September 30-October 1, Canadian Health Ministers will meet to consider the options for a national plan for access to drugs for rare diseases. In July, the Canadian Organization for Rare Disorders (CORD) hosted a Summit of international and Canadian experts to deliberate the components of an “appropriate, responsible, and...

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