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New Campaign Celebrates Canadian Rare Disease Changemakers

November 20, 2023

Brings focus to the 1 in 12 Canadians who will be affected by rare diseasei

TORONTO, ON – November 20, 2023 – Today, 13 Canadian rare disease organizations, in partnership with Takeda Canada Inc. (“Takeda”,) unite to launch I Am Number 12, to raise awareness of the 1 in 12 Canadians who will be affected by a rare disease in their lifetime. The campaign highlights the challenges and needs of people living with rare diseases, and how collectively, rare diseases aren’t really that rare.

I Am Number 12 - Meet the 1 in 12

At the forefront, are a group of Changemakers who represent the diverse make-up of the rare diseases’ community. They are patients, caregivers, clinicians, and advocates, who stand together to ensure that all Canadians living with rare diseases have equitable access to diagnosis, care, and the resources they require – no matter where they live.

The campaign includes stories from Kelly Newell, a resilient Alpha-1 warrior raising three boys who bear the burden of this disease; Dr. Aneal Khan’s relentless pursuit of understanding rare metabolic conditions; and Elisabeth Linton who tirelessly fought to support the first gene therapy clinical trial in memory of her late daughter with Sanfilippo Syndrome, also known as Mucopolysaccharidosis type III (MPS III).

Their unique and personal stories have been captured through the lens of photographers from across the country. Their portraits will be unveiled today at a celebratory event and will be available to view online through the @IAmNumber12CA Instagram social page later this month.

Meet our Changemakers

Canadians are encouraged to visit @IAmNumber12CA on Instagram to read our stories, amplify our voices and even share their own rare story with #Iamnumber12.

Starting Tuesday, November 28 as part of a 12 Days of Giving initiative, we will spotlight a new Changemaker each day, providing educational information on the rare disease and patient organization they represent and encouraging charitable giving and donations to help our organizations continue to support the communities we serve.

Quotes from our Community

  • “Living with a rare disease can be challenging but there is hope. Greater awareness and education about rare diseases can make all the difference in supporting the rare disease community, including myself. I am proud to lend my voice as a Changemaker to inspire change and understanding.” – Kerstyn Lane, Changemaker living with Hereditary Angioedema Type 1 and Vice President & Regional Director (Pacific), HAE Canada
  • “This campaign is an important reminder that rare disease does exist. It is all around us - and we will all likely know and care for someone who is impacted. We are proud to stand in solidarity with our community. Together, we can raise awareness about the challenges of living with rare diseases and advocate for equal access to healthcare through the National Strategy for Drugs for Rare Diseases.” – Christine White, President, The National Gaucher Foundation of Canada
  • “At its heart, I Am Number 12 is a community-driven, collaboration between Takeda and a vast network of patient organizations, to recognize the everyday heroes of rare diseases who are our Changemakers. Our joint goal is to increase understanding of what it’s like to live with a rare disease, bring better health and a brighter future to all patients by addressing areas of high unmet need, and to show Canadians that rare diseases aren’t always that rare.” – Rute Fernandes, President & General Manager, Takeda in Canada

About Rare Disease in Canada

An estimated 7,000 rare disorders exist worldwide. People living with rare diseases often face numerous challenges – from delayed diagnosis and treatment, to facing stigma, isolation and even discrimination. On average, it takes 6-8 years before a patient receives a correct diagnosis; in this time, a patient will see an average of eight physicians and receive two to three misdiagnoses. In Canada, most treatments for rare disorders get approved up to six years later than in the USA and Europe. 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.

About I Am Number 12

I Am Number 12 is an awareness campaign launched with 13 Canadian rare disease patient organizations and Takeda. These are: HAE Canada, Immunity Canada, Alpha-1 Canada, Canadian Fabry Association, National Gaucher Foundation of Canada, Canadian MPS Society, GBS/CIDP Foundation of Canada, Answering TTP, Regroupement québécois des maladies orphelines (RQMO), Association des Patients Immunodéficients du Québec (APIQ), Angio-oedème héréditaire du Québec (AOHQ), Sickle Cell Disease Association of Canada, Canadian Organization for Rare Disorders. The campaign was initiated and funded by Takeda.

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:

Emilita Dela Cruz, Argyle

[email protected]


i Building a National Strategy for High-Cost Drugs for Rare Diseases: A Discussion Paper for Engaging Canadians. https://www.canada.ca/en/health-canada/programs/consultation-national-strategy-high-cost-drugs-rare-diseases-online-engagement/discussion-paper.html. Accessed October 2023.