New Hope For Canadian Children With Rare Diseases

New Hope For Canadian Children With Rare Diseases

With a policy and plan in place, Alexis Verville-Tailleur and other Canadians will have equal access to care and treatment.
New Brunswick s Damaging Provincial Drug Policy

New Brunswick’s Damaging Provincial Drug Policy

“For someone in Canada suffering with a rare disease, there is no worse place to live than New Brunswick” says Brad Crittenden.  
Canada s Insurers In It For The Long haul

Canada’s Insurers: In It For The Long-haul

Canada’s insurers are acutely aware of the emotional and financial burden Canadians face when diagnosed with a rare disease.
Highly Complex Rare Diseases Require Extensive Expertise

Highly Complex Rare Diseases Require Extensive Expertise

Neuroendocrine cancer is one of the rarest forms, affecting less than six people per 100,000.  Individual treatment plans are key to fighting these complex tumours.  
Access To Medication The Physician s View

Access To Medication: The Physician’s View

The reluctance of some provincial governments to fund life saving treatments for rare diseases is both frustrating and heartbreaking for sufferers and their families, but what do the physicians who care for patients with conditions like Atypical Hemolytic Uremic Syndrome (aHUS) make of these bewildering drug policies?  
The Responsibility To Manage Public Benefits Lies In The Hands Of The Government

The Responsibility To Manage Public Benefits Lies In The Hands Of The Government

A basic premise of all societies is that the group will contribute to protect its most vulnerable or disadvantaged members.  
A Canadian Action Plan For Rare Diseases

A Canadian Action Plan For Rare Diseases

Technological advances in the past few years have enormously increased our capacity for genome sequencing and have reduced its cost by a millionfold.  
Canada At The Helm of Rare Disease Research

Canada At The Helm of Rare Disease Research

After decades of dwelling in the shadows, the compelling narrative of rare inherited diseases appears to be making its way into Canada’s collective consciousness; conditions affecting every body system, impacting millions of Canadians (rare diseases aren’t rare), bound neither by geography, nor ethnicity nor socio-economic status.  
An Optimistic Future For Rare Diseases In Canada

An Optimistic Future For Rare Diseases In Canada

Thirty years ago, a newborn was withheld from adoption because she displayed low muscle tone, sporadic head movements and poor sucking response.
Patients Face Inconsistent Care and Unequal Access

Patients Face Inconsistent Care and Unequal Access

What if you waited 20 years to finally get a treatment for your condition but learn it’s only available in certain parts of Canada? That just happens to be a reality for many people who suffer from a treatable rare disease.