Welcome To Ignite

Orphan diseases are rare disorders that affect less than one in 2000 people in Canada or less than 200,000 individuals in the United States. But, collectively, the 7000 known orphan diseases impact 1 in 12 Canadians, causing physical and mental hardship, and draining money and resources from our health care system. The $4.9-million, Genome Canada-funded IGNITE project (Orphan Diseases: Identifying Genes and Novel Therapeutics to Enhance Treatment) is designed to help alleviate the impacts of orphan diseases, and provide new solutions for the patients, families and caregivers of this diverse range of human diseases.

The Need

Imagine a disease. It steals your child’s sight. It has no cure. It is so rare that it is not understood by the medical community. It is unclear what it will do next. 

Jeff and Cathy Sawler have experienced the pain and isolation of such a disease with their daughter, Tarah. 

Tarah was born with the genetic condition known as FEVR, which creates varying degrees of visual impairment. By the age of eleven, FEVR had completely robbed Tarah of vision. 

“When I think of what I’ve gone through,” says the bright, active and musically-talented 13-year-old, “It’s just not right that someone else would have to go through it.” (Watch the video of Tarah and her family.)

The IGNITE project is taking an innovative approach to FEVR and other rare disorders to find new information and discoveries that can lead to prevention, treatments and cures for people like Tarah and her family.