In the landscape of healthcare, the challenge of addressing rare diseases is top of mind for approximately three million Canadians and their loved ones. Celebrating Rare Disease Day is a time to reflect on the importance of a national rare disease strategy and the impact it holds for those suffering with these life altering diseases.
Rare diseases, by their very definition, affect a small percentage of the population yet they aren’t that rare. With thousands of rare diseases identified so far and millions of people affected, they’re actually pretty common. Yet their complexity and the diagnostic odyssey they impose on patients and families are anything but small. In Canada, those navigating this journey are often marked by uncertainty, prolonged suffering, and the quest for answers and effective treatments.
At Alexion Canada, our commitment to rare diseases extends beyond our therapeutic advancements; it’s about advocating for a system that addresses the holistic needs of the rare disease community.
Recently, the journey towards a national strategy in Canada has been marked by significant milestones, including the federal government’s commitment of $1.5 billion over three years to support access to drugs for rare diseases and affordability. But despite the announcement, progress has stalled, with no significant advancements beyond the formation of an advisory group. Rare disease patients and their families deserve better.
Rare Disease Day serves as a reminder of what’s at stake and the urgent need for action. It’s a day that brings together patients, families, healthcare professionals, researchers, and policymakers, united by a common goal—to shine a light on rare diseases and the collective efforts required to tackle them.
Alexion Canada’s dedication to this cause is reflected in our patient-centric approach, where every effort is made to understand and address the unique challenges faced by patients living with rare diseases. By championing the rare disease strategy and getting the government’s funding moving, we can transform lives, one patient at a time.
The path towards a national strategy and the betterment of rare disease care in Canada is a testament to the power of collaboration, innovation, and dedication. It’s a journey that transcends individual interests, focusing instead on the shared vision of a future where every rare disease patient has the opportunity to lead a fulfilling life. At Alexion, we recognize the vital role each of us plays in making it a reality. Together, we can make a difference in the lives of millions, turning hope into action and challenges into breakthroughs.
AstraZeneca Canada is a Sponsor of Research Canada’s Rare Diseases in Canada: Virtual Panel Hosted by the Honourable Senator Marie-Françoise Mégie. For more information, visit rc-rc.ca.