Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.
February 28, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.
Flash was designed with the help of 7 year old Noah, who lives with Pompe disease. Noah is a courageous young boy that was diagnosed with Pompe disease when he was 2, in 2011. In Noah’s case, this means he has an enlarged heart.
March 9th and 10th, 2016 members of the Canadian Organization for Rare Disorders decended on Ottawa for their annual meeting and Awards Gala.
Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008. Since then it has spread with events all around the world that reach hundreds of thousands of people. Rare Disease Day always takes place on the last day of February.
John and Kelvin Dyck may be brothers, but the two men share more than a last name. They also have in common a rare condition called Pompe disease. The genetic disorder affects only about one in 40,000 people, and causes a progressive weakening of heart and skeletal
VANCOUVER, Jan. 19, 2016 /CNW/ – Most of the 2.8 million Canadians with a rare disease experience extraordinary and unnecessary barriers getting the right diagnosis, specialist, and treatment. On the eve of Canada’s Health Ministers’ meeting in Vancouver, the Canadian Organization for Rare Disorders (CORD) and the Economic Club of Canada convened a panel calling for the immediate implementation of Canada’s Rare Disease Strategy.
Genzyme Recognizes International Rare Disease Day with Global Education and Fund-Raising Events; Announces Founding Partnership of Give RARE
Genzyme, a Sanofi company, announced today that in support of International Rare Disease Day, the company is hosting several events internationally to help raise awareness of rare diseases as a critical global health issue requiring ongoing research, education and new treatments. Genzyme also announced that it is a founding partner of Give RARE, a rare diseases global giving day.
A special insert to the (October 19, 2013) National Post that brings focus to the topic of rare disease in Canada, how it affects so many of us, and what changes are forthcoming.
The Dutch Rare Disease Day was celebrated in Amsterdam. A big surprise was planned for all participants. The Dutch Genzyme team, in close collaboration with the organizing committee, had organized an unannounced spectacular end to the meeting!