Did you know 1 in 12 Canadians has a rare disorder?
Thursday, February 29, 2024, is Rare Disease Day, and we need YOU to help raise awareness of Duchenne muscular dystrophy.
Duchenne, although a rare disease, is the most commonly diagnosed form of muscular dystrophy in children. It is a genetic disorder that leads to progressive muscle loss and affects approximately 1 in every 5,000 live male births. This means that around 800 Canadians and their families confront the challenges posed by this debilitating disease.
Defeat Duchenne Canada has been a beacon of hope for children and families, championing the Duchenne community as the leading voice in Canada for over 28 years. Still, the rarity of conditions like Duchenne presents a unique hurdle. With a smaller affected population, attracting the necessary investments in research, treatment development, and awareness can take time and effort.
Join us on Rare Disease Day to bring attention to Duchenne and share your story to send a message of solidarity as we strive for a future free from this life-shortening disease.
Although Duchenne muscular dystrophy is a rare disease, the story of those affected doesn’t have to be – a story not defined by the disease but by the connections available and the hope for a cure.
We invite you to share your personal story and help forge connections with more families, sending a message of solidarity as we strive for a future free from Duchenne.
How it works:
- Use our story submission form to write about your experience, and feel free to include photos or video testimonials.
- You can post in English, French, or both from now until February 29.
- On February 29, we will showcase all the stories gathered to celebrate Rare Disease Day.
Click the ‘Share Your Story’ button to learn more!
What is Rare Disease Day?
Rare Disease Day is a global movement that aims to promote equity in social opportunities, healthcare, and access to diagnosis and treatments for people with rare diseases like Duchenne. It is observed annually on February 28 (or February 29 in leap years) – the rarest day of the year.
This day encourages everyone, including individuals, families, caregivers, healthcare professionals, researchers, policymakers, industry representatives, and the general public, to increase awareness and take action to support those with rare diseases.
Click the ‘Rare Disease Day International’ button to learn more!
The Canadian Organization for Rare Disorders (CORD) is hosting a Rare Disease Day Summit on February 28 and 29. This event will take place both in person at the Ottawa Marriott Hotel and virtually. The summit’s theme is “Year of Firsts” to commemorate the first anniversary of Canada’s National Rare Disease Drug Strategy announcement. It also marks the launch of Canada’s inaugural Rare Disease Network, bringing together patients, professionals, policymakers, payers, the general public, and pharmaceutical developers with a shared vision and coordinated efforts.
Click the ‘CORD Summit’ button to learn more!
A year after its announcement, Canadians have still not seen any movement of the National Rare Disease Drug Strategy funding of $1.4 billion. The Canadian Organization for Rare Disorders (CORD) is launching a campaign urging governments to unlock this promised funding to save lives of patients of rare diseases across the country.
The campaign includes an open letter to Prime Minister Trudeau and Canadian Health Ministers, amplified by ads across news sources and social media. You can take action by sending emails to decision-makers, participating in social media conversations using #FightForOurLives, sharing pre-written messages, joining the march on Parliament Hill on February 29, and spreading awareness among friends and colleagues.
The CORD #FightForOurLives Campaign is an opportunity to call for a rollout plan for this crucial funding that significantly impacts the lives of rare disease patients, like those with Duchenne muscular dystrophy.
Click the ‘#FightForOurLives Campaign’ button to learn more!