Given the important role the federal government has in helping those affected by rare diseases, CORD has taken the opportunity of the election to ask each political party what their respective plans are for improving the lives of the nearly 3 million Canadians with rare diseases and their families.
It is important that our politicians understand “rare” diseases affect nearly 3 million Canadians, on par with diabetes (affecting 2.4 million Canadians) and cancer (combined affecting about 1.4 million persons). One key difference is that about half of those with rare diseases are children. We all know the struggles patients with rare diseases have to contend with, delays in testing, wrong diagnoses and missed opportunities to effectively receive treatment. These challenges not only negatively impact the health and quality of life of these patients and their caregivers, but they are also very costly for the healthcare system and Canadian society.
This is why we recently launched Canada’s Rare Disease Strategy, which lays out a five-point action plan calling upon all levels of government to take action to help patients. We have embarked on a series of Economic Club of Canada luncheons to discuss the strategy and how Canada can improve the lives of people living with rare diseases. It is our great hope that each political party recognizes the importance of immediate action and commits to support our strategy.
We all have a part to play in this process and we urge each and every one of you to take a moment and contact your local candidates running in this election. Now is the time to make your concerns known and demonstrate to candidates of all political stripes that patients and their families are in urgent need of action from the Government.
Below is the question to pose to each candidate:
We are counting on your support and leadership as the next federal government or as an important player in the House of Commons to help make Canada’s Rare Disease Strategy a reality. We invite you to respond to the question below. We will be circulating your responses to the rare disease community and will be posting them on our website at www.raredisorders.ca.
Should your party form the next Government, will you support Canada’s Rare Disease Strategy and its five goals of improving early detection and prevention, getting the right care to patients as early as possible, enhancing community support, providing sustainable access to promising therapies, and promoting innovative research?
Below are links to find your candidate:
Conservative Party of Canada – http://www.conservative.ca/team/ (enter postal code)
Liberal Party of Canada – http://www.liberal.ca/team-trudeau/ (enter postal code)
NDP Party of Canada – http://www.ndp.ca/candidates (scroll down to enter postal code)
Please submit your question to your local candidates by October 7 and copy CORD when you send it at firstname.lastname@example.org.
As well please take a moment and follow us on twitter, @raredisorders. You can also retweet us or tweet to your candidates directly. Below is a draft tweet for you to use and the above links will also show you each candidate’s twitter handle.
@INSERT LOCAL CANDIDATE will you help the 3 M Cnds suffering from rare diseases and commit to the Rare Disease Strategy http://tinyurl.com/pa25gye #elx42
March 21, 2018
Delta Hotels Ottawa City Centre: 101 Lyon Street North, Ottawa
6th Annual Rare Disease Day Awards Gala Join us on Thursday evening, March 21st, when CORD will host its annual Rare Disease Day Awards Gala. We will recognize those individuals and organizations that have made extraordinary contributions to the Canadian rare disease community over this past year. Cocktail reception at 6:00 pm followed by dinner at 7:00 pm Business or Smart Cocktail Attire Gala Ticket: $195 Patient Gala Ticket: $125 Table of 8: $1500