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.
The Rare Disease Opportunity of a Lifetime
After decades of advocacy, Canada’s rare disease community can develop a comprehensive rare disease strategy — but time is short.
Life Sciences Industry Can Help Patients and the Economy
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.
A Better Approach to Rare Diseases in Canada
Canada’s innovative pharmaceutical industry is calling for a more collaborative, patient-focused approach to tackling rare diseases.
Collaboration Is Key to the Future of 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.
The Rare Neurological Condition That Masquerades as MS
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.
A Rare Disease Isn’t Stopping This Ambitious Young Artist
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: Building Communities for Rare Diseases
RareConnect is a social networking platform that connects families with rare diseases by developing online communities and conversations across continents.
Patient Support Programs Help People with Rare Diseases
Support programs empowers patients, help ease their anxiety, and speeds up access to the specialty treatments that they need.
You Can Help Us Understand and Fight Rare Diseases
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 Vital for Rare Disease Treatments
Clinical trials are critical to the success of research, development, and access to treatments for rare diseases like cystic fibrosis.
Who Was That Masked Man? These Superheroes Fight ALS
Steven Gallagher has ALS. He’s turned to superheroes to inspire his fight — and others’— against the terminal neurodegenerative disease.
