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, Feb. 26,
2024 /CNW/ - 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
1
|
Canadian Organization
for Rare Disorders. Canada's Rare Disease Strategy. Available
from: https://www.raredisorders.ca/canadas-rare-disease-strategy/
|
2
|
European 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
|
3
|
Shire. 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
|
4
|
Canadian 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/CORD_Canada_RD_Strategy_22May15.pdf
|
SOURCE Takeda Canada Inc.