Patient Voice invites those with rare disease in Canada to tell their story

Campaign, running through March, aims to 'effect meaningful change'

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The online platform Patient Voice has opened a campaign, running throughout March, to spotlight the stories of people in Canada with rare diseases like Lambert-Eaton myasthenic syndrome (LEMS).

This year’s effort under the Canada’s Rare Voices campaign, Patient Voice aims to share stories from patients, caregivers, and clinicians dealing with any of the more than 7,000 known rare diseases.

“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,” Meghan White, a rare disease patient advocate and Patient Voice spokesperson, said in a press release.

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“By reading and sharing these stories, you can help magnify our voices and effect meaningful change,” White said.

Those interested in taking part can contact Patient Voice through its online portal, and stories will be available on the organization’s website.

This year’s campaign started in February, ramping up to Rare Disease Day on Feb. 28 and continuing throughout March. It is spotlighting the unique experiences of 11 “incredible” rare disease patients or caregivers — from the challenges of living with a rare condition to the ways they pursue their passions and the lessons learned. Eleven clinicians also will share their experiences, addressing topics like getting a diagnosis, managing symptoms, and accessing treatments.

While rare diseases are individually unusual, having a rare disease can be relatively common in Canada — about 3 million people there, or 1 in every 12 Canadians, is living with a rare disorder, according to the Canadian Organization for Rare Disorders (CORD).

Still, it can be hard to find a community for a condition that affects few people. Patient Voice aims to be an online service to help people with rare diseases connect with others facing many of the same challenges. The organization is working in collaboration with CORD and other patient advocacy organizations to expand the reach of its campaign.

“It’s this sense of isolation that we really want to change. 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,” White said.

Financial supporters of the Canada’s Rare Voices campaign include Alexion AstraZeneca Rare Disease, Amylyx Pharmaceuticals, BioCryst Canada, Chiesi Global Rare Disease, Incyte Biosciences Canada, Ipsen Biopharmaceuticals Canada, Pfizer Canada, and Ultragenyx Canada.