I attended the Canadian Organization for Rare Disease Innovation to Technology conference, it was a two-day event focused on technology, what’s coming and what’s available in Canada pertaining to rare disease.
There were a few things I took away from it, there are lots of smart people in Canada, we seem to be going in the right direction, but government and regulations slow the process down SO much. This isn’t just a Canadian problem, technology and research are happening far faster than government can process. I included a slide that shows the hundreds of days it takes to bring a drug to market; our kids don’t have that kind of time.
Its important to be informed, but it can always so be frustrating. I met a lot of other people in similar situations and I know the power of families can make waves that create change, so I will continue to do that.