February 29th marks Rare Disease Day. On the rarest day of the year, we are reminded of the reality that 1 in 12 Canadians will be impacted by rare disease in their lifetime.1 A critical need exists to create meaningful change and action for the growing rare disease community in Canada.
Recently, 13 Canadian rare disease organizations, in partnership with Takeda Canada Inc. ("Takeda"), united to launch I Am Number 12 - a national campaign dedicated to sharing the unique stories and perspectives of rare disease Changemakers, and to show that rare diseases aren't really that rare. The initiative continues to amplify the voices of those in the community to encourage conversations on Rare Disease Day.
People living with rare diseases often face numerous challenges – from delayed diagnosis and access to treatment, to facing stigma, isolation and even discrimination. Greater education and understanding of the impact of rare diseases can play a role in how gaps and challenges patients face are addressed to support better quality of life.
"Rare diseases have an immense impact on a person's life – including my own daughter, Madi, who lives with Cystic Fibrosis (CF). Through our family's journey, we will continue to show our support for the rare disease community," says Beth Vanstone, Cystic Fibrosis advocate and mother to Madi Vanstone. "We have the power in our voices, to ignite conversation and awareness for people like Madi. We hope that we can be a beacon of hope for others on Rare Disease Day and beyond."
On average, it takes six-to-eight years before a patient with a rare disease receives a correct diagnosis; in this time, a patient will see an average of eight physicians and receive two to three misdiagnoses. The burden of rare disorders is significant, not only for those living with an illness, but on families, healthcare and social systems, workplaces, the economy, and our collective social welfare. In March 2023, the federal government announced an investment of up to $1.5 billion over three years in support of the first-ever National Strategy for Drugs for Rare Diseases, with funding made available to provinces and territories through bilateral agreements.
"Rare Disease Day is a symbol of hope for millions of Canadians impacted by rare diseases. We acknowledge the significant contributions that are essential to support the rare disease community," says Rute Fernandes, President & General Manager, Takeda Canada. "Takeda is honoured to partner with rare disease organizations who work tirelessly to advocate for the one in twelve Canadians affected by a rare disease."
In honour of Rare Disease Day, Canadians are encouraged to show their support by following @IAmNumber12CA on Instagram and by sharing their own stories online using the hashtag #IAmNumber12CA.
For more information visit the Canada's Rare Disease Strategy website.
