Skip to main content

Provincial government to expand services for 700,000 Quebecers with rare diseases

Share

The provincial government says it will broaden services for those suffering from rare diseases, a reality that affects an estimated 700,000 Quebecers.

The Health Ministry announced its new rare diseases policy on Monday, which aims to expand diagnostic services and treatments across the province, especially in remote areas.

It's welcome news for people like cyclist Pierre Lavoie, who lost two of his children to a rare disease called lactic acidosis.

"There was no funding," said Lavoie, who himself is the founder of Grand Defi Pierre Lavoie, a cycling fundraiser for lactic acidosis research.

At the time -- over two decades ago -- the condition was practically "unknown," he added.

Lavoie said the system failed to make any improvements in the four years between the deaths of his daughter and son, which occurred over two decades ago.

In his eyes, Monday's announcement is a much-needed step in the right direction.

Lavoie is from the Saguenay-Lac-Saint-Jean region, where there's a higher concentration of the disease, tied to the early French settlers who lived there.

About 80 per cent of rare diseases are genetic.

The Quebec government says it will provide genetic carrier testing for regions like Saguenay.

It also promised to focus on more isolated regions, such as remote Indigenous communities.

"I know the difficulties that such a situation entails, as well as the importance of improving access to services offered by the health and social services network to help people living with this reality," said Marilyn Picard, parliamentary assistant to the health minister, in a press release.

There are an estimated 5,000 to 9,000 documented rare diseases. They come in many forms, including auto-immune disorders, malformations, infections, and rare cancers.

The Quebec government has established an advisory committee and says an action plan will be developed over the next few months.

CTVNews.ca Top Stories

'Rust' armourer gets 18 months in prison for fatal shooting by Alec Baldwin on set

A movie weapons supervisor was sentenced to 18 months in prison in the fatal shooting of a cinematographer by Alec Baldwin on the set of the Western film "Rust," during a hearing Monday in which tearful family members and friends gave testimonials that included calls for justice and a punishment that would instill greater accountability for safety on film sets.

Donald Trump hush money trial, explained

All of Donald Trump's trials and the characters involved make for a complicated legal mess, particularly when the four criminal cases are added to Trump's civil liability for defamation and sexual misconduct and for business fraud. Here's what to know to get up to speed on this first criminal trial, starting April 15, 2024.

Here's what to expect in the 2024 federal budget

Deputy Prime Minister and Finance Minister Chrystia Freeland will be presenting the 2024 federal budget on Tuesday, revealing how the federal Liberal government intends to balance the nearly $40 billion in pre-announced new spending with her vow to remain fiscally prudent.

Prince Harry in legal setback about security protection in U.K.

Prince Harry's fight for police protection in the U.K. received another setback on Monday, when a judge rejected his request to appeal an earlier ruling upholding a government panel's decision to limit his access to publicly funded security after giving up his status as a working member of the royal family.

Stay Connected