Rare Disease Team

B.C. teen with rare disease wins fight to receive costly drug from province | CBC News

Miles Ambridge, 14, who has spinal muscular atrophy, has finally won his fight with the B.C. Health Ministry to get access to one of the most expensive drugs in the world.

B.C. funding decision on pricey drug leaves teen with rare disease facing 'scary' future | CBC News

B.C. has expanded its coverage of an exorbitantly expensive drug that could make a huge difference for Miles Ambridge’s future, but at 14 years old, he’s just a bit too old to qualify.

B.C. patients and families demand access to $700,000 a year drug for rare disease

Canadian breakthrough that became the world's most expensive drug, then vanished, gets second...

Glybera, a made-in-Canada medical breakthrough that became known as the world's most expensive drug, was abandoned after only one commercial sale in Europe. After seeing a CBC report on Glybera's...

Toronto family turns to fundraising 'boot camp' to help back research into son's rare genetic...

The latest stop for the Pirovolakis family in the search for a cure for their who has a rare genetic disorder is San Diego. Terry Pirovolakis is at conference for families of patients with rare...

Alberta runner Dave Proctor looking to shatter trans-Canada speed record in 2020 | Globalnews.ca

Ultramarathoner Dave Proctor is penetrating again to run 7,200 kilometres across the country in 65 days, to raise money and awareness for rare diseases that are difficult to diagnose and treat.

Opinion: Drug-price reforms need not affect research on rare diseases – or the Canadians who have...

It is unlikely that new pricing reforms will limit pharmaceutical companies’ desire to hold trials for rare-disease drugs. They need us, too.

Ottawa promises to save billions with tweaks to patent drug system | CBC News

The federal government is making changes to the way it will evaluate new drug prices, a tweak it says will save Canadians billions over the next 10 years.

B.C. Minister of Health: approvals for expensive treatment must be based on evidence, affordability

As pressure mounts for the government to cover more expensive treatments for rare diseases, B.C.'s Health Minister, Adrian Dix, says approval must be based on clinical evidence and affordability. 

Patient with rare disease pleads for life-saving drug funding | CBC News

An eastern Ontario man diagnosed with a rare autoimmune disease wants the drug that worked on him in hospital to be funded by the province.

Province working on approving life-saving medication for Vancouver Island 3-year-old - BC |...

A desperate Vancouver Island family is asking the province to approve a drug that could save their daughter's life.

Ontario expands coverage for Spinraza

The decision to pay for Spinraza for additional children and teens with a neuromuscular disorder that affects fewer than 500 Canadians came as a federal advisory council unveiled a blueprint for a...