Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

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

  1. Follow Jesse’s Journey: Facebook @defeatduchenne | Twitter @jesses_journey | Instagram @jesses_journey
  2. Share our posts about Rare Disease Day to help raise awareness with your network

OR

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: www.jessesjourney.com.
  • 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: www.jessesjourney.com.
  • 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: www.jessesjourney.com.

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Rare Disease Day Webinar: Celebrating Achievements that Support A Pan-Canadian Rare Drug Program

The Canadian Organization for Rare Disorders (CORD) will focus their next webinar on:

  • 5 Years of Advances in “5 Pillars” of Canada’s Rare Disease Strategy
  • How to Monitor Rare Drugs from Clinical Trials to Real-World Usage
  • How Rare Disease Patient Organizations Support Appropriate Access and Usage

Date: February 26, 2021
Time: 12:00 p.m. EST

Click the button below to learn more and register.

Rare Disease Day Conference: From Draft to Action Plan

The Canadian Organization for Rare Disorders (CORD) will be hosting a conference for Rare Disease Day.

Date: March 9 – 10, 2021
Time: 11:00 a.m. – 2:00 p.m. EST

Click the button below to learn more and register.

In the News

Canada’s Rare Voices

The Toronto Star has created an eight-week online program for Rare Disease Day 2021, devoted entirely to increasing the visibility of Canada’s rare disease communities through original patient, caregiver, advocate, and clinician storytelling.

Nicola Worsfold (Director of Research and Advocacy at Jesse’s Journey) and her 13-year old son, Owen, who has Duchenne, were featured in the article ‘Critical therapies remain out of reach for many Canadians with rare diseases.’

Rare Disease Campaign 

Maclean’s Magazine has created a campaign to raise awareness of Rare Disease Day 2021, drawing attention to the more than 7,000 rare diseases. The campaign aims to foster dialogue between patients, caregivers, industry leaders, and policymakers,  encouraging collaboration on patient access and rare disease education.

Rick Moss (Director of Strategic Partnerships), was featured in the article ‘Collaboration Is Key to Success in Rare Disease Research and Development.’

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.

www.rarediseaseday.org

Canadian Rare Disease Strategy

In February 2019, the Canadian government committed $1 billion to a national Rare Disease Drug Strategy to be put in place in 2022.  In September 2020, in the Speech from the Throne, the government further committed to an overall Canadian Rare Disease Strategy, first presented to Parliament in 2015.

Jesse’s Journey fully supports the development of a Rare Disease Strategy and continues to advocate for the Duchenne community through the Canadian Organization for Rare Disorders (CORD) and Health Canada. Please see our position paper on why Canada needs a Rare Disease Strategy below.