Canada’s Rare Voices campaign aims to ignite powerful, patient-centric conversations about rare disease

Gaucher disease patient advocate and Patient Voice ambassador, Meghan White. (CNW Group/Patient Voice)

TORONTOFeb. 24, 2023 /CNW/ – Patient Voice, an online platform that aims to educate Canadians through the power of storytelling, launched the 2023 edition of its annual Canada’s Rare Voices campaign. The campaign shares the stories of Canadian patients, caregivers and clinicians in an effort to build a greater understanding of what it’s like to live with, or care for a loved one living with, one of the more than 7,000 known rare diseases.1

According to the Canadian Organization for Rare Disorders (CORD), approximately 1 in 12 Canadians live with a rare disorder. And while that means approximately 3 million Canadians are impacted by these potentially life-altering diseases, those making up this significant proportion of the Canadian population often feel alone in their healthcare journeys.

“It’s this sense of isolation that we really want to change,” explained Meghan White, a rare disease patient advocate and Patient Voice spokesperson. “By sharing personal stories with broader audiences, we can expand Canadians’ understanding of what living with a rare disease is like and how we can all support our family, friends and neighbours who face these challenges every single day.”

The Canada’s Rare Voices campaign intends to focus Canadians’ attention on the lived experience of those with a rare disease by harnessing the power of storytelling.

In the lead-up to Rare Disease Day on February 28, 2023 and continuing through the month of March, this campaign will spotlight the stories of 11 incredible rare disease patients and caregivers who, in their own words, will share their unique experiences, challenges, passions, and lessons-learned.

Alongside these stories, Canada’s Rare Voices will also feature original interviews with 11 clinical experts who will address key topics such as diagnosis, disease management, and access to treatment.

To reach as many Canadians as possible, Canada’s Rare Voices will amplify its poignant stories through a coordinated promotional campaign. This bilingual campaign will include stories shared by leading Canadian publishers, a content hub at, and placements across social platform and programmatic channels.

“Canadians who would like to show their support for the rare disease community are encouraged to look for and follow the Canada’s Rare Voices campaign, read our stories, learn from the clinicians’ insights, and, most importantly, share with their peers,” said White. “By reading and sharing these stories, you can help magnify our voices and effect meaningful change.”

Canada’s Rare Voices has engaged key patient support and advocacy organizations who play a crucial role in patient identification and will expand the overall reach of the campaign. These groups include: the Canadian Organization for Rare Disorders (CORD); Regroupement québécois des maladies orphelines (RQMO); MitoCanada; the Canadian XLH Network; the Canadian FOP Network; ALS Action Canada; HAE Canada; Defeat Duchenne Canada; Muscular Dystrophy Canada; the Canadian Association of PNH Patients; the Canadian Fabry Association; and the Cholangiocarcinoma Foundation.

Canada’s Rare Voices has been supported by a number of rare disease innovators including Alexion AstraZeneca Rare Disease; Amylyx Pharmaceuticals, Inc.; BioCryst Canada; Chiesi Global Rare Disease; Incyte Biosciences Canada Corporation; Ipsen Biopharmaceuticals Canada Inc.; Pfizer Canada ULC; and Ultragenyx Canada Inc.

SOURCE Patient Voice

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