Much like the diseases themselves, the rare disease landscape in Canada is difficult to navigate. Beyond the physical effects, the broader impacts of rare disease such as mental, emotional and financial health, are often overlooked. February 29, 2020 marked Rare Disease Day, a day to raise awareness and show support for the one in 12 Canadians affected by a rare disorder.
Knowing that rare disease affects more than those just those living with a rare condition, Vertex Pharmaceuticals (Canada) Incorporated engaged NATIONAL to broaden the conversation to include the wider rare disease community, with a focus on caregivers.
With Vertex, and in partnership with patient advocacy groups in both Ontario and Quebec, NATIONAL developed two surveys to better understand the needs of not only those living with a rare disease, but also those caring for these individuals. The 2019 Impact of Rare Disease Survey and 2020 Quebec Impact of Rare Disease Survey gauged the financial, emotional, mental and physical impacts for those living with rare disease and those who care for them.
The results told a devastating story of isolation, instability and frustration. This story was shared with audiences through a media relations strategy and creative infographics, disseminated by the patient advocacy groups.
To help humanize survey results, NATIONAL worked with individuals living with, and caring for those with, cystic fibrosis (CF), a fatal genetic disease that primarily impacts one’s lungs and digestive system. NATIONAL drove a media relations campaign to share the stories of these individuals during both CF Awareness Month in May 2019, and more recently for Rare Disease Day 2020. Participants shared their personal experiences with the disease, including the daily obstacles they face and their ongoing determination to improve the health and well-being of Canada’s CF and rare disease communities.