Durhane Wong-Rieger is the president and CEO of the Canadian Organization of Rare Disorders (CORD).
CORD is a non-profit organization that represents over 100 patient organizations in educating Canadian policy makers on the value of Canada developing a Rare Disease Strategy to help the patients as well as researchers thrive in this country.
Unfortunately, many policy makers do not see the need to create a rare disease strategy in Canada and as Wong-Rieger explains, Canada is “the orphan of the orphans.”
Wong-Rieger said, “because we’re right above the US, we benefit a lot from what the United States is doing in terms of research and development. So, a lot of clinical trials that take place in the U.S., patients from Canada can actually be involved in them ( if aware of them or if our clinicians are aware). And a lot of the research and development that takes place in the U.S. actually does have a spillover effect in terms of being able to support some sites in Canada.”
That ease of letting the U.S. take care of the work means that Canada is missing out on early patient access, research funding, and biotech investments.
Wong-Rieger said, “Canada has never had orphan drug legislation and we would approach our governments to say why don’t we and their answer, sort of, is we don’t have to do that the U.S. is doing it and we think this is a tragedy because it limits the kind of research that takes place in Canada. That also means we have no investing in terms of research and development for rare diseases. It also means that rare diseases has a lesser profile in Canada than it might if you actually had huge investments in it.”
For more information, visit https://www.raredisorders.ca/