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Championing Rare Voices on Rare Disease Day

February 26, 2024

1 in 12 Canadians will be impacted by rare disease in their lifetime1

I Am Number 12 campaign continues to drive action for rare disease community

TORONTO, Ontario – February 26, 2024 – 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.2 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.3 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.4 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.

About Takeda Canada Inc.

Takeda Canada Inc. is the Canadian organization of Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE: TAK), a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discovering and delivering life-transforming treatments, guided by our commitment to patients, our people and the planet. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Rare Genetics and Hematology, Neuroscience, and Gastroenterology (GI). We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines. We are focusing on developing highly innovative medicines that contribute to making a difference in people’s lives by advancing the frontier of new treatment options and leveraging our enhanced collaborative R&D engine and capabilities to create a robust, modality-diverse pipeline. Our employees are committed to improving quality of life for patients and to working with our partners in health care in approximately 80 countries and regions. For more information, visit: takeda.com/en-ca

Media Contacts:

Amanda Jacobs

[email protected]

+1 647-798-2231

1Canadian Organization for Rare Disorders. Canada's Rare Disease Strategy. Available from: https://www.raredisorders.ca/canadas-rare-disease-strategy/ 

2European Organisation for Rare Diseases. Rare Diseases: understanding this Public Health Priority. November 2005. Available from: https://www.eurordis.org/wp-content/uploads/2009/12/princeps_document-EN.pdf

3Shire. Rare Disease Impact Report: Insights from patients and the medical community. April 2013. Available from: https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

4Canadian Organization for Rare Disorders. Now is the Time: A Strategy for Rare Diseases is a Strategy for all Canadians. May 2015. Available from: http://www.raredisorders.ca//content/uploads/CORDCanadaRDStrategy22May15.pdf