Madi Vanstone News Today

On the rarest of days, Feb. 29, organizers are marking and celebrating Rare Disease Day.

Rare Disease Day is marked across Canada to help draw awareness of some of afflictions such as CF through the @IAmNumber12CA campaign.

Madi Vanstone spent the first half of her young life trying not to die. These days she’s learning how to live life to the fullest.

'I really think that it's important that Canadians become aware and expect more from our government,' says Bradford woman whose daughter has cystic fibrosis

The rare disease community has started a petition urging the government to come up with a Rare Disease Strategy that will allow patients easier access to life-saving treatments and medications

'It's a balance between affordability and accessibility,' says policy researcher