As part of our latest strategic plan, Jesse’s Journey identified a need that we felt we were well-suited to address.
Recently, in Europe and the U.S., we have seen new treatments approved for boys with Duchenne and even more that are currently in clinical trials. However, they are very expensive and have had challenges getting approval and even more challenges getting funded.
In 2016, Rick Moss (former Managing Director) took on a new role overseeing advocacy at Jesse’s Journey. We are working closely with CORD (Canadian Organization of Rare Disorders) to get the attention of decision makers to establish an Orphan Drug policy for Canada. This would provide greater incentives for research and speed up the approval process for Duchenne and other rare diseases. Canada also needs to implement a pharma care plan that would cover these expensive drugs, once they are approved. We have been meeting with politicians of all parties and a variety of organizations in an effort to have these concerns addressed.
For more information about the role Jesse’s Journey is taking in advocacy, please contact Rick Moss