Rare Disease Heroes

Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.

Rare Disease Day 2017 from CAP

Rare Disease Day 2017 from CAP

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.

Rare Disease Day 2016

Rare Disease Day 2016

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.

Inequities Between Provinces in Treating Rare Diseases

Inequities Between Provinces in Treating Rare Diseases

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

Rare Disease Strategy Urgently Needed to Help 3 Million Canadians

Rare Disease Strategy Urgently Needed to Help 3 Million Canadians

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 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.

Flashmob Rare Disease Day, Amsterdam

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!