Rare Disease Day initiative celebrates Canadians' differences, shines light on Canadians living with rare diseases
Public invited to attend What Makes You Rare? event at Brookfield Place on February 28, 2020
TORONTO, Feb. 24, 2020 /CNW/ - Josie Dye's six-year-old son, Cole, lives with Sotos Syndrome, a rare disease characterized by overgrowth in childhood that is typically accompanied by learning challenges.
Since Cole's birth, Josie and her family have lived through many of the challenges common to families coping with a rare disease. Some of these challenges can include finding an accurate diagnosis, the availability of treatment and gaining access when therapies are approved, and securing the ongoing care needed to support health and quality of life.
As a radio host, broadcaster and mom, Josie is sharing her family's experience in the hopes of increasing awareness about rare diseases in Canada, as well as helping combat the feelings of isolation many patients and their families feel. It's an important message for the estimated one in 12 (or more than three million) Canadians who live with a rare disease, two-thirds of whom are children.i
"Families need to remember that you're not alone," says Josie. "Sometimes we feel like we're sinking, and that we're the only ones struggling, but there are so many out there who are living with a rare disease. Being able to connect with others, who either share your experience or are willing to offer support, is absolutely crucial to long-term wellbeing."
What Makes You Rare?
With the goal of bringing attention to this remarkable and resilient community, the Canadian Organization for Rare Disorders (CORD), in partnership with Sanofi Genzyme, is helping to highlight the stories of these patients and families to mark Rare Disease Day 2020.
"It is critically important to share the stories of those living with rare diseases in Canada," says Durhane Wong-Rieger, President & CEO, CORD. "When we listen to their experiences, we are more educated about, and more empathetic to, the challenges these individuals and their families encounter every day. In turn, we can each become champions of the rare disease community, helping to advocate for the services and support they need."
To encourage this national storytelling, CORD and its patient group partners Answering TTP Foundation, Canadian Association of Pompe, Canadian Fabry Association, Canadian MPS Society, and The National Gaucher Foundation of Canada, are posing the question "What makes you rare?". The question is meant to inspire Canadians to think about and articulate their own unique stories and share them as a sign of solidarity and support for the rare disease community. Canadians are encouraged to share their own answers via social media on the "What Makes You Rare?" Facebook event page.
Rare Disease Day 2020 Event: February 28, 2020, 8 AM to 6 PM, Brookfield Place (downtown Toronto)
In a further effort to help educate the general public about rare diseases and engage Canadians in a conversation about living with a rare disease in Canada, Josie, CORD, the partner patient associations and Sanofi Genzyme are hosting an interactive "What Makes You Rare?" event on February 28, 2020, from 8 a.m. to 6 p.m., at Brookfield Place in downtown Toronto.
At the event, visitors can engage with the different stories of Canadians in the rare disease community through original photography and videos.
"Rare Disease Day is a wonderful opportunity to become more educated about rare diseases and their impact," says Josie, "but it can't stop there. It's important to remember that we live with these rare diseases 365 days a year. For us, every day is Rare Disease Day."
Rare Disease Day 2020 Event Partners
- Answering TTP Foundation
- Canadian Association of Pompe
- Canadian Fabry Association
- Canadian MPS Society
- The National Gaucher Foundation of Canada
About Canadian Organization for Rare Disorders (CORD)
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca
SOURCE Canadian Organization for Rare Disorders