Fellow members of the rare diseases community:
Attached is a letter that I just sent to the federal Health Minister, whom I hope to have the chance to meet when I am in Ottawa, next week.
Now is a critical time for our campaign to implement a federal orphan drug regulatory framework and an intergovernmental initiative to help fund rare disease treatments so that no Canadian is left behind.
I would urge you to consider writing to your MP and convey a similar message of support. The next few months represent a tremendous opportunity for CORD and all of our partners: February 29, 2016 is actually a rare day, and we will be once again advocating on Parliament Hill. In the meantime, we continue to take our message to communities across Canada, and our Economic Club of Canada luncheons are gaining more attention every time. We’re putting every effort into the Economic Club event in Vancouver, in January, which will be timed to align with meetings of the federal-provincial-territorial ministers of health.
We once again need your help and that of your communities – please help spread the word through your networks. Letters to MPs don’t require any postage. Simply include all or part of the following messages, and thank you for contributing your voice to this important national effort.
President & CEO
Canadian Organization for Rare Disorders
FIRST: Find out who your MP is if you don’t already know by entering your postal code at this WEBSITE.
SECOND: either email or send by post (no postage required) a letter like the one below. Feel free to add your story or connection with rare disorders, as personalizing the message will help bring home the need for national action!
THIRD: if you get a response, share it with us by sending us a copy at email@example.com.
Dear Mr./Ms./Minister/Dr. [LAST NAME],
House of Commons
[Mr./Ms./Dr.] [FIRST NAME] [LAST NAME], M.P.
I am writing to ask for your support for the nearly 3 million Canadians living with rare diseases. As a member of parliament in Ottawa, you can help by asking Canada’s new Health Minister to support Canada’s Rare Disease Strategy, first by implementing a national orphan drug regulatory framework as an immediate priority, and second, by helping to establish the Canadian Partnership for Rare Disorders.
Every Canadian deserves access to quality, efficient, and sustainable healthcare. Of the 7,000 rare diseases, only 5% have any effective treatments. Canadian patients access only about 60% of these, due in part to the lack of a national Orphan Drug regulatory framework, which supports research, development, clinical trials and commercialization of treatments. In October 2012, then Federal Health Minister Aglukkaq committed to establishing a Canadian Orphan Drug Framework, similar to the 1983 USA Orphan Drug Act and the 2000 European Union Orphan Drug Act. The relevant regulations and departmental guidances are fully prepared but were never implemented. We urge you to implement Canada’s Orphan Drug Framework without further delay.
Way back in October 2005, Health Minister Ujjal Dosanjh committed to patients and families, who had waited for two days outside the Federal/Provincial/Territorial Health Ministers meeting, to develop a plan for funding (expensive) drugs for rare diseases. Eleven years later, these patients are still waiting. CORD is committed to working with the federal and provincial governments to achieve rational and sustainable solutions that would provide appropriate and timely access to patients who are suffering from progressive and life-threatening rare conditions. We urge you to work collaboratively with the Provincial and Territorial Health Ministers who have committed to considering a plan at the next joint meeting in January 2016 in Vancouver.
Please pass on your support for these initiatives to Health Minister Philpott. To learn more, please visit http://www.raredisorders.ca/canadas-rare-disease-strategy/, and you’ll see that the strategy brings together all Canaidans, including patients, researchers, healthcare professionals, health charities and the private sector. We’re ready to do our part. Are you?
[INSERT YOUR NAME HERE]
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