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.
The Relentless Work Editorail This is our second edition of the year, the first having come out in January. A lack of texts and resources is responsible for this long break. Here is some recent news I’d like to share. A few weeks ago, during the annual general meeting, a
On September, 20 Hugo Landreville, muralist graffiti artist, created a chalk picture on theme near CHUM Research Center on St-Denis Street in Montreal. The aim of the event is to raise awareness on underfunding of research on rare diseases, including hereditary ataxias.
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. Canadians wishing
When armed conflicts, plagues, and cataclysms are making headlines, only few medias cares about the fate of millions of people in the world suffering of hereditary disabilities. Even so, some countries do care about it. The Institute of Genetic Diseases Imagine was inaugurated June 28 2014 in Paris, France. It
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