February 20, 2017
Approximately 3 million Canadians and their families face a debilitating disease that severely impacts their lives. That’s about 1 in 12 Canadians, and two-thirds of those with a rare condition are children. However, because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country.[i]
Families working through the diagnostic odyssey of a rare disease know all too well the anxiety and uncertainty that comes without knowing what the future may hold and having a clear pathway forward. An accurate diagnosis is the foundation for the best medical care.
About 80% of rare diseases are caused by genetic changes. Genome BC is proud to support important rare disease research in British Columbia. On February 28, join us in recognizing the important work underway to help families find a diagnosis that can lead to better treatment, disorder specific medications and best practice medical care.
Here are three ways for you to get involved:
- Join us as we take part in an important conversation on Twitter February 28th, 2017! Follow along, learn and discuss using the hashtag #RareDiseaseDay.
- Participate in Rare Disease Day events taking place across Canada
- Follow The Causes Clinic @causes_genomics
The Causes Clinic is a research clinic at BC Children’s Hospital in Vancouver BC working to help provide genome-wide sequencing for children who have complex, undiagnosed rare disorders that cannot be diagnosed through standard testing. The Causes Clinic is one of the Rare Disease projects Genome BC helps fund. To learn more, follow @causes_genomics or visit http://www.causes.clinic/
