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Rare Disease

Collage of Rebecca Van Fraassen's art
Collage of Rebecca Van Fraassen's art
Artwork by Rebecca Van Fraassen.

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.

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