One in 12 Canadians are affected by a rare disease. Are you one of them?  Takeda Canada commemorates Rare Disease Day with the launch of video patient stories

March 1, 2019

OTTAWA, Ontario – As part of International Rare Disease Day activities across the country and in collaboration with ten patient associations, Takeda Canada Inc. is privileged to launch a new social media campaign to educate Canadians about the importance of access to early diagnosis, treatment and resources by sharing the compelling stories of patients living with rare diseases. Whether it is a diagnosis, treatment, a support network or other resources, all patients should be able to access what they need to help manage their disease.


Lori Culum (Fabry Disease) and Hanan Van Holst (Guillain-Barré Syndrome) are the two patients featured in this campaign, and while the story for every patient of rare disease is different, they are among nearly 3 million Canadians living with a rare disease.ii


Lori’s story began when she was 5 years old. “For 36 years, I lived with an undiagnosed rare disease. Once diagnosed, you simultaneously have this sense of relief and a sense of worry,” she explains. “I have made a choice as to how I am going to live my life and that is not in fear. I will be the best possible role model that I can be for my children.” Lori, whose son also has a rare disease, focuses her time on advocacy to ensure that he and others are able to access the right treatment options.


It was 2017 when Hanan Van Holst was rushed to hospital unable to breathe. Two days later she awoke paralyzed, intubated, and in treatment for Guillain-Barré syndrome. “I hope that Canadians, if they’ve heard of a rare disease or if they know someone who has one, will ask a lot of questions, to try to understand and educate themselves on the rare disease that a loved one or a friend has, so they can be a better support to them and be more understanding,” she says.

Lori and Hanan’s stories are captured in videos that will be shared on social media by patient associations from today until March 28th. Our partners include the Canadian MPS Society, Rare Disease Foundation (RDF), Canadian Organization for Rare Disorders (CORD), Canadian Fabry Association, Canadian Association of Pompe, the ILC Foundation and the Regroupement québécois des maladies orphelines.

Their video stories are just one part of a wider collaborative effort to bring awareness to rare diseases, which includes a flag-raising event at Parliament Hill earlier today, hosted by the Rare Disease Foundation (RDF). Representatives from rare disease patient associations from across Canada will converge on the Nation’s Capital to discuss the intense patient burden, and how the Federal Government can help make access to necessary diagnostic testing and treatments, where available, a top priority across the rare disease spectrum.


Chris Gilmor, an RDF board member and parent of a child with a rare disease, believes a united effort is the
best way to be heard. “I strongly believe in raising our collective voice so that rare diseases get the attention
they need, and parents and others caring for people with rare diseases get the support they need, to help
patients manage their conditions,” he said. “This includes having faster and better access to different
diagnostic services as well as access to treatments that can make a profound difference to patients and their
loved ones.”


About rare diseases
A rare disease is defined as a condition affecting fewer than one in 2,000 people. There are more than 7,000
known rare diseases and many more that remain unidentified.iii About one in 12 people (nearly 3 million
Canadians) have a rare disease.iv Most known rare disorders are severe and chronic, with many being
degenerative and life threatening. People who do not have a specific diagnosis can be denied access to
necessary medical support services.v


About International Rare Disease Day
International Rare Disease Day is held on the last day of February every year to raise awareness of rare
diseases. This year is the 12th edition, coordinated by EURORDIS, the European Organisation for Rare
Diseases. On and around this day hundreds of patient organizations all over the world hold awareness-raising
activities. www.rarediseaseday.org


About the Rare Disease Foundation
With a vision of revolutionizing rare disease care, the Rare Disease Foundation (RDF) has as its mission to
create communities of patients, caregivers, health care providers, researchers and supporters that work
together to transform the lives of those living with rare disease. The RDF is focused on translational care –
linking basic science and clinical practice to increase the efficiency of rare disease research. This model
drives patient-based, treatment-focused research projects from disease characterization to treatment with
greater efficiency. www.rarediseasefoundation.org


About Takeda Pharmaceutical Company Limited
Takeda Pharmaceutical Company Limited (TSE:4502/NYSE:TAK) is a global, values-based, R&D-driven
biopharmaceutical leader headquartered in Japan, committed to bringing Better Health and a Brighter Future
to patients by translating science into highly-innovative medicines. Takeda focuses its R&D efforts on four
therapeutic areas: Oncology, Gastroenterology (GI), Neuroscience, and Rare Diseases. 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 https://www.takeda.com


About Takeda Canada
Takeda Canada headquarters is currently located in Oakville, Ontario. The Oakville and Toronto offices
comprise the Canadian sales and marketing organization of Takeda Pharmaceutical Company Limited.
Takeda Canada is delivering better health for Canadians through leading innovations in gastroenterology,
oncology, neuroscience, and rare diseases. Additional information on Takeda Canada is available at
takeda.com/en-ca.


 

Media Contact:

Amanda Jacobs
Takeda Canada
amanda.jacobs@takeda.com
647-923-6479

 

Andrew Ross
NATIONAL Public Relations
aross@national.ca
514-773-8755


 


i Canadian Organization for Rare Disorders, https://www.raredisorders.ca/our-work/
ii About orphan drugs and rare diseases. Government of Canada,
https://www.canada.ca/en/health-canada/services/licences-authorizations-registrations-drug-health-products/regulatory-approach-drugs-rare-diseases/about-drugs-rare-diseases.html
iii About CORD. Canadian Organization for Rare Disorders (CORD). https://www.raredisorders.ca/about-cord/
iv About orphan drugs and rare diseases. Government of Canada,
https://www.canada.ca/en/health-canada/services/licences-authorizations-registrations-drug-health-products/regulat
ory-approach-drugs-rare-diseases/about-drugs-rare-diseases.html
v Rare Disease Foundation: https://rarediseasefoundation.org/about/faq/