Rare Diseases
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.  

New Brunswick’s Damaging Provincial Drug Policy

Patient Perspective“For someone in Canada suffering with a rare disease, there is no worse place to live than New Brunswick” says Brad Crittenden.  

New Brunswick’s Damaging Provincial Drug Policy

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

Access to MedicationCanada’s insurers are acutely aware of the emotional and financial burden Canadians face when diagnosed with a rare disease.

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

Highly Complex Rare Diseases Require Extensive Expertise

Advancements in ResearchNeuroendocrine 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.  

Highly Complex Rare Diseases Require Extensive Expertise

Access To Medication: The Physician’s View

Access to MedicationThe 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?  

Access To Medication: The Physician’s View

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

Creating a Canadian PlanA basic premise of all societies is that the group will contribute to protect its most vulnerable or disadvantaged members.  

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

A Canadian Action Plan For Rare Diseases

Creating a Canadian PlanTechnological advances in the past few years have enormously increased our capacity for genome sequencing and have reduced its cost by a millionfold.  

A Canadian Action Plan For Rare Diseases

Canada At The Helm of Rare Disease Research

Advancements in ResearchAfter 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.  

Canada At The Helm of Rare Disease Research

An Optimistic Future For Rare Diseases In Canada

Creating a Canadian PlanThirty years ago, a newborn was withheld from adoption because she displayed low muscle tone, sporadic head movements and poor sucking response.

An Optimistic Future For Rare Diseases In Canada

Patients Face Inconsistent Care and Unequal Access

Creating a Canadian PlanWhat 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.  

Patients Face Inconsistent Care and Unequal Access

One Family’s Fight To Get The Ontario Government To Fund An Essential, Life-saving Medication

Patient PerspectiveLike every mother, Beth Vanstone will do whatever it takes to ensure the health and safety of her kids. It’s trickier for Vanstone, though. Her daughter, Madi, suffers with a rare form of cystic fibrosis, a genetic disease that creates a thick mucus build up which causes serious damage to the lungs, digestive track and sinuses.  

One Family’s Fight To Get The Ontario Government To Fund An Essential, Life-saving Medication

Rare Diseases: Mapping The Inconsistencies

Access to MedicationDoes Canada’s universal health care system ensure that people suffering with rare diseases receive consistent care, regardless of the city or province that they live in?

Rare Diseases: Mapping The Inconsistencies

Canadians Paying The Price For Inequality In Healthcare

Creating a Canadian PlanAbout 2.8 million Canadians live with a rare disorder and can access treatment in most but not all provinces. Thankfully, there are people and organizations in place, working hard to create portable healthcare across Canada.

Canadians Paying The Price For Inequality In Healthcare