At the heart of our work are the individuals and families living with Duchenne. Their experiences shape our advocacy priorities, strengthen our impact, and inspire our commitment to creating meaningful change.
Creating meaningful change also requires collaboration across the healthcare landscape. By working alongside clinicians, researchers, governments, policymakers and rare disease partners, we bring the voices of individuals and families to the forefront to advocate for a healthcare system where every person living with Duchenne in Canada can access the care, treatments, and support they need to live their fullest life.
Building a strong, informed, and connected Duchenne community empowers patients, families, and advocates to drive improvements in diagnosis, care, research, treatment access, and quality of life.
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Timely diagnosis, including through newborn screening, gives families the information they need to make informed decisions, access specialized care, and participate in research and clinical trials.
As people with Duchenne live longer, care must evolve with them. A proactive, coordinated approach is essential to ensure consistent access to specialized care, treatments, and support throughout every stage of life.
Defeat Duchenne Canada advocates for newborn screening and earlier diagnosis, as well as equitable access to coordinated, continuous care from childhood through adulthood.
Innovation only matters when people can access it. Individuals and families living with Duchenne in Canada can wait years for new therapies that are available elsewhere, while lengthy regulatory and reimbursement processes can create further delays. In some cases, therapies available in other countries are never submitted for approval in Canada, leaving Canadians without access altogether.
Defeat Duchenne Canada advocates for timely, equitable access to clinical trials and approved therapies, so Canadians living with Duchenne can benefit from scientific advances as quickly and equitably as people living in other leading countries.
Duchenne is a progressive disease where muscle damage begins before symptoms are visible and continues over time. Delays in diagnosis, treatment access, and multidisciplinary care can mean missed opportunities to preserve muscle function and quality of life. That is why Defeat Duchenne Canada is committed to ensuring the voices of individuals and families living with Duchenne are heard—because timely action can impact lives.
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Duchenne Drugs Approved by Country
