Rare Disease Day 2023
Did you know 1 in 12 Canadians has a rare disorder?
That’s approximately 3 million Canadians and their families who face a debilitating disease that severely impacts their lives.
Tuesday, February 28, 2023, is Rare Disease Day, and we ask for your help in raising awareness of Duchenne muscular dystrophy.
Though Duchenne is the most common fatal genetic disorder diagnosed in childhood, it is considered a rare disease, affecting 1 in every 5,000 male births worldwide. Because rare diseases, like Duchenne, affect a smaller number of people than those with more common illnesses, it becomes far more challenging to find the investment into scientific understanding and treatment development – this is where Defeat Duchenne Canada has made a difference.
We have been the leading voice for the Duchenne community in Canada for more than 27 years – investing more than $16 million to date into the most promising research. Our investments, made possible by donors – like you, have resulted in the discovery of potential treatment options. While this is an exciting time, we also need to ensure that Canadians have equal access to these treatments as they are discovered.
According to the Canadian Organization for Rare Disorders (CORD), only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than other countries. This is the sad truth for Duchenne. Currently, six medications are approved in the United States and Europe to slow the progression of this muscle-wasting disease, yet nothing has been approved in Canada. For those living with Duchenne, time is muscle, and the lives of our Canadian children and young adults with Duchenne are at risk.
HOW TO GET INVOLVED
Letter Writing Campaign
Join our letter-writing campaign to inform your Member of Parliament (MP) about Rare Disease Day and the urgency to invest the $500 million annual allocation into a Rare Disease Strategy:
- Find your MP and their email address here: www.ourcommons.ca/members/en/search
- Copy and paste the below message into an email:
Subject: Time is Muscle – Please Help on Rare Disease Day 2023
Dear [insert Mr. or Ms. Last Name]
I am writing as a constituent in your riding and a concerned member of the Duchenne muscular dystrophy community in Canada to inform you of Rare Disease Day on Tuesday, February 28, 2023.
One in every 5,000 boys worldwide is born with Duchenne muscular dystrophy – a rare disease but the most common fatal form of muscular dystrophy. The disease is relentless. It slowly weakens the body’s muscles, deteriorating the function of vital organs and ultimately – shortening their life.
Currently, six medications are approved in the United States and Europe to slow the progression of this muscle-wasting disease, yet nothing has been approved in Canada.
In 2019, the federal government committed $1 billion to set up a national Rare Disease Drug Strategy, with an additional $500 million annually. Three years later, after numerous consultations led by the Canadian Organization for Rare Disorders (CORD), we are still waiting for the federal government to implement a Rare Disease Strategy that supports a Rare Disease Drug Framework. Time is muscle, and the lives of our Canadian children and young adults with Duchenne are at risk.
Help us ensure that all treatments for Duchenne muscular dystrophy deemed safe and effective are made available in this country as quickly as possible. Please forward this email to the federal Minister of Health on or leading up to February 28, demanding he invests the $500 million annual allocation into a Rare Disease Strategy.
I appreciate your consideration of this request and look forward to a timely response expressing your willingness to support our community in this urgent matter.
[insert your full name]
On behalf of Defeat Duchenne Canada and the Canadian Organization for Rare Disorders (CORD)
3. Send the email to your MP, copying (CC) the Minister of Health, Jean-Yves Duclos: firstname.lastname@example.org and email@example.com
Rare Disease Day Breakfast Reception
The Canadian Organization for Rare Disorders is hosting Breakfast Reception at Queen’s Park celebrating International Rare Disease Day. This is an opportunity for patients, families and advocates to meet with Members of the Provincial Parliament and other supporters:
The event starts at 8:00 am. ET on Tuesday, February 28, at the Legislative Assembly of Ontario (Queen’s Park – 111 Wellesley Street West, Legislative Dining Room, Toronto, Ontario).
Click the ‘register’ button to learn more!
Rare Disease Day Conference
The Canadian Organization for Rare Disorders is hosting a Rare Disease Day Conference focussed on optimizing the $1 billion investment in a Rare Drug Strategy.
Join them in person or online from March 28-29, 2023, in Ottawa, Ontario (located TBD).
Click the ‘register’ button to learn more!
About Rare Disease Day
What is Rare Disease Day?
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6,000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.
Launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008, Rare Disease Day is the official international awareness-raising campaign for rare diseases that takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.