Dr. Kym Boycott, FRCPC FFCMG
Senior Scientist, CHEO Research Institute &
Lead, Care4Rare Canada Consortium
It’s very, very scary. You don’t know what their future’s going to be, or if they’ll talk or walk. I was very isolated. Doctors didn’t even know the name of the disorder for many years.Mother of two daughters with a rare disease.
One million Canadians are affected by the more than 7,000 rare diseases that have so far been identified by medical researchers. These diseases are so rare that most doctors have never heard of them. Families are often isolated, yet they’re highly-motivated and frequently become experts in their own conditions.
RareConnect is a social networking platform designed to connect families with rare diseases by developing online communities and conversations across continents. RareConnect has grown rapidly, with nearly 50,000 members and 240 disease specific communities across 13 languages, and provides a supportive environment to ask questions and share experiences.
These conversations are a critical source of information about these rare diseases, but families still face barriers to participating in research that would leverage their knowledge. To help provide this crucial access, Care4Rare, a national network of clinicians and scientists studying rare diseases led by Dr. Kym Boycott, has developed a separate research portal for RareConnect. RareConnect MyStudies collects self-reported data via customizable surveys. Available on any device, MyStudies transcends barriers and uses lived experiences to improve the care of rare disease.
Heather Howley, MS is Research Funding Development Officer for the CHEO Research Institute.