Isabel Calderón, a member of the CHI Board of Directors from Canada, attended the Annual Congress of the Canadian Organization for Rare Disorders (CORD) held in Ottawa on October 1-2, 2010. A full two days of presentations and workshops made up the agenda. About 120 representatives from different Canadian rare disorder associations and individual patients participated in the congress. This was CHI’s first contact with CORD and it was an opportunity to spread awareness of congenital hyperinsulinism and CHI. But mostly, the Congress provided an occasion to learn from the experience of other organizations and associations and to learn more about Canadian rare disorder initiatives.
Although Canada has yet to catch up to the US and EU in creating an infrastructure for rare disorder funding and research, there are interesting research programs in place and advances are being made towards newborn screening. An additional difficulty for the treatment of rare disorders in Canada is that each province has its own legislation and regulations. This mostly affects access to orphan drugs. Luckily diazoxide and octreotide are available throughout Canada. Introducing a new drug for the treatment of HI would be a long battle.
Raising awareness amongst the medical professionals in order to increase timely diagnosis of HI is needed in Canada as much as it is elsewhere. With the emergence of newborn screening for rare disorders we are motivated to work with the medical experts to put together a protocol for HI new born screening. The fact that CHI has few contacts with HI families from Canada also raises the necessity to increase our visibility in the different provinces to make sure we can offer support to all those whose child is being diagnosed with HI. CHI is working hard to tackle these challenges and counts on the support of its members for continuing progress.
