What Rare Disease Day is about
28 February 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.
What is a Rare Disease?
A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population. Although the disease may be rare, patients and families share a common struggle.
Living with a Rare Disease, Day-by-day, Hand in hand Theme for 2017
Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.
Rare Disease Day in Canada
Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada.
Highlights in 2016 included an event in Ontario where people blew over 7000 bubbles to represent the total number of rare diseases. In Ajax, there was also a rare disease Expo, which offered potential solutions to create inclusive, accessible communities.
The Canadian National Alliance, the Canadian Organization for Rare Disorders (CORD), serves as the voice for the estimated 1 in 12 Canadians affected by a rare disease. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder.