Rare Disease Day 2025
Starts February 28, 2025
12:59 AM
Ends February 28, 2025
11:59 PM
Event Type: Virtual
Event Category: Advocacy
Audience Type: Everyone
Did you know 1 in 12 Canadians has a rare disorder?
Friday, February 28, 2025, is Rare Disease Day
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 30 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 as we celebrate 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.
Take Action
Rare Moments: Virtual Storytelling Event
On February 27, we hosted the Rare Moments: Virtual Storytelling Evening, an evening dedicated to celebrating the unique and inspiring stories of families living with Duchenne muscular dystrophy. This heartfelt event brought together our incredible community to share the moments that make their journeys unforgettable.
What to Expect:
Whether it’s a funny anecdote, a touching memory, or the lessons learned along the way, each story shines a light on the resilience, courage, and hope that define life with Duchenne.
- Hear powerful stories from families across Canada
- Connect with others who understand the challenges and triumphs of living with Duchenne
- Be inspired by the courage and strength of our community
Want to be a Storyteller? Do you have a rare moment or unique experience to share? We’re inviting families to share their stories as guest speakers during the event. You can volunteer to be a live speaker, submit written stories, photos, or videos to feature in our storytelling showcase.
Interested in sharing? Email us at [email protected] to learn more.
Register Below! Reserve your spot for this free virtual event and receive the Zoom link.
Family Story Map
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 28, we will showcase all the stories gathered to celebrate Rare Disease Day.
Click the ‘Share Your Story’ button to learn more!
Rare Disease Day Offical Video
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 Official’ button to learn more!
