Rare Disease Day 2021
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.
Sunday, February 28, 2021, 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. 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 more than 25 years – investing more than $13.1 million to date into the most promising research around the world. 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 improve their lives. This needs to change.
HOW TO GET INVOLVED
JOIN US ON SOCIAL MEDIA
- Follow Jesse’s Journey: Facebook @defeatduchenne | Twitter @jesses_journey | Instagram @jesses_journey
- Share our posts about Rare Disease Day to help raise awareness with your network
Create your own posts by sharing the images below along with a fact about Duchenne:
- Did you know: Duchenne muscular dystrophy is a muscle-wasting condition affecting 1 in every 5,000 boys in Canada? February 28 is Rare Disease Day. Share this post to help raise awareness of this fatal genetic disease: defeatduchenne.ca.
- Did you know: 90% of boys diagnosed with Duchenne muscular dystrophy are in wheelchairs by age 15? February 28 is Rare Disease Day. Share this post to help raise awareness of this fatal genetic disease: defeatduchenne.ca.
- Did you know: Since 2014, five medications for Duchenne have been approved in the USA and Europe? While in Canada, Duchenne families are still waiting. February 28 is Rare Disease Day. Share this post to help raise awareness of this fatal genetic disease: defeatduchenne.ca.
ABOUT RARE DISEASE ADVOCACY
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.
We asked four families from across Canada: “What is it like living with the rare disease, Duchenne muscular dystrophy?” Read their heartfelt and inspiring responses below.