Not only do rare diseases receive less funding than other diseases in Canada, they also receive less media attention, and as a result, become misunderstood or stigmatized. Rare Disease fosters dialogue between patients, caregivers, industry leaders, and policymakers to encourage collaboration on patient access and rare disease education.
After decades of advocacy, Canada’s rare disease community can develop a comprehensive rare disease strategy — but time is short.
Just as vaccines are helping ease the worries of the COVID-19 pandemic, we’re on the cusp of a new and promising era for treating rare diseases.
Canada’s innovative pharmaceutical industry is calling for a more collaborative, patient-focused approach to tackling rare diseases.
Pharmaceutical researchers are working on treatments for rare diseases in areas like gene therapy, as more than 80% of rare diseases have a genetic origin.
While MS and NMOSD can present similarly, physicians need to be able to tell the apart, because therapies that are effective for MS actually worsen NMOSD.
Thanks to therapeutic advances, adults with SMA — like 21-year-old OCAD student Rebecca Van Fraassen — are chasing their dreams and reaching their potential.
RareConnect is a social networking platform that connects families with rare diseases by developing online communities and conversations across continents.
Support programs empowers patients, help ease their anxiety, and speeds up access to the specialty treatments that they need.
We need to truly appreciate the hard work that goes into the research and development of rare diseases in Canada. Hillary McKibbin’s life depends on it.
Clinical trials are critical to the success of research, development, and access to treatments for rare diseases like cystic fibrosis.