In January 2021, Health Canada launched a national online initiative to engage Canadians in the development of a National Strategy for Drugs for Rare Diseases.
More than 650 patients, families, stakeholders, and patient organizations – like Jesse’s Journey – provided their diverse perspectives on getting better access to the effective drugs they need. Throughout the engagement, participants overwhelmingly felt a national approach was the most important element for a strategy and should be guided by key principles and values such as transparency, accountability, flexibility and being patient-centred. We were proud to bring the voice of the Duchenne community into every opportunity and look forward to the launch of the national strategy in 2022.
The report, ‘What We Heard’ is now available and reflects these key themes and feedback. Click the buttons below to read the press release along with the full report.