Director of Advocacy

Director of Advocacy

Full-time: 40 hours per week, Monday-Friday (occasional evenings/weekends for events)

Location: Hybrid/Remote possible

Reports to: Executive Director

About Duchenne muscular dystrophy

One in every 5,000 boys is born with Duchenne muscular dystrophy, the most common fatal form of muscular dystrophy. The disease is progressive and relentless. It gradually weakens the body’s muscles, deteriorating function of vital organs and ultimately shortening life expectancy.

The Duchenne treatment landscape in Canada is challenging. While several therapies are approved in the United States and Europe, access in Canada remains limited to clinical trials or Special Access Programs provided by Health Canada. Furthermore, access to care and treatment across Canada remains inconsistent, particularly within adult care. This highlights an urgent need for more equitable, coordinated, and comprehensive approaches to supporting individuals and families affected by Duchenne.

About Defeat Duchenne Canada

Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy. Throughout our 30-year history, we have provided leadership in research, advocacy, education, and support. Our organization, originally known as Jesse’s Journey, was founded in 1995 when John Davidson embarked on an epic journey, pushing his son Jesse in his wheelchair across Ontario to raise awareness and funds for Duchenne research.

We are proud to be the largest funder of Duchenne research in Canada. Beyond research, we provide essential education and support, advocate for better treatments, and work to ensure equitable access to high-quality healthcare, so every person living with Duchenne can live their best life.

Position Summary

The Director of Advocacy will be a key member of Defeat Duchenne Canada’s senior team, responsible for shaping and executing advocacy strategies to improve access to treatments and care, influence health policy, and strengthen the voice of the Duchenne community across the country. This individual will build strong relationships with government officials, healthcare stakeholders, partner organizations, and affected families to drive meaningful, systemic change.

Key Responsibilities:

• Strategic Advocacy: Develop and execute Defeat Duchenne Canada’s government relations and advocacy strategy at the federal, provincial, and territorial levels. Develop policies, tools, and action plans for Defeat Duchenne Canada to advocate at the federal/provincial level that are compliant with CRA regulations for non-for-profit organizations.
• Policy Engagement: Monitor and analyze health policy developments related to rare diseases, health care, drug approval, reimbursement, and access. Recommend strategic responses and actions when needed.
• Stakeholder Relations: Build and maintain strong working relationships with policymakers, healthcare professionals, health institutions, partner organizations, pharmaceutical partners, media outlets, and community advocates.
• Data Collection: In collaboration with DDC team members, develop appropriate data collection and reporting methods to support advocacy efforts.
• Community Mobilization: Develop an engagement plan to equip families and community members with tools and resources to effectively advocate at their local level. In collaboration with DDC’s National Coordinator of Education, Engagement & Support, plan, coordinate, and execute national events that bring the community together to learn, share, and take action.
• Coalition Building: Represent Defeat Duchenne Canada in national and international advocacy coalitions, alliances, and working groups.
• Communications Support: Working with marketing and communications, education, research, and funding teams to develop advocacy-related content, including policy briefs, stakeholder messaging, position papers, web content, and calls to action.
• Reporting & Evaluation: Track, evaluate, and report on advocacy outcomes to leadership and the Board of Directors.

Qualifications:

• Bachelor’s degree in public policy, political science, health administration, communications, or related field (MSc an asset).
• Minimum five years of experience in government relations, health policy, nonprofit advocacy, or a related field.
• Proven success in developing and executing advocacy campaigns.
• Strong understanding of Canada’s healthcare systems, rare disease drug development process, and rare disease access/reimbursement processes and challenges (experience in neuromuscular disorders an asset).
• Excellent written and verbal communication skills, with experience drafting policy briefs and stakeholder communications.
• Strong relationship-building and networking skills.
• High level of initiative, strategic thinking, and ability to work both independently and collaboratively.

Why Join Us?

• Be part of a passionate, mission-driven team shaping the future for Canadian families impacted by Duchenne muscular dystrophy.
• Directly influence health policy and access to life-changing treatments and care.
• Flexible/hybrid working environment.
• Competitive compensation and benefits package.

How to Apply

Applications (cover letter and a comprehensive resume) for the Director of Advocacy opportunity with Defeat Duchenne Canada should be submitted in confidence by Monday, January 19th, 2026 at 5pm EST to: careers@defeatduchenne.ca.

Defeat Duchenne Canada values diversity, equity and inclusion. We welcome applications from all qualified candidates.