Home NEWS & UPDATES Rare Disease Day 2020
Did you know approximately 1 in 12 Canadians, two-thirds of them children, are affected by a rare disease? Saturday, February 29, 2020, 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 7,250 male births. 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 Jesse's Journey has made a difference.
We have been the leading voice for the Duchenne community in Canada for the past 25 years – investing more than $11.5 million to date. 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 Canadian boys and young men 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. While Duchenne families in Europe and the USA have access to some treatments, there are currently no treatments available in Canada. That means people with rare disorders, like Duchenne, are at risk because they are missing out on therapies that could significantly improve their lives. This needs to change.
"There is hope on our horizon with a number of drugs in the pipeline, some of these approved in other countries. But as a Canadian living with Duchenne hope is hard to hold on to while we wait for these treatments to be approved in Canada. What's worse is when these drugs finally do get approved, our children might lose their eligibility for that treatment because we had to wait for our provinces to decide on whether to fund it. This is not acceptable and needs to change now before its too late for our children."
– Nicola Worsfold, Director of Research and Advocacy at Jesse's Journey (Mother of Owen, 13 years-old living with Duchenne)
Please help us raise awareness of Duchenne and advocate on behalf of thousands of Canadian families by sharing this video with your network through email and social media: https://youtu.be/mTyA2q4cVu4.
A video was also produced by CORD when we gathered in Toronto, Ontario to celebrate the 1 in 12 Canadians living with a rare disease, to advocate for access to innovative treatments, and to educate the public on the lifelong challenges people with a rare disease face. The result was an unforgettable day of sharing, advocacy, and empowerment:
Thank you for joining us on Rare Disease Day – together, we can #defeatduchenne.