PRP Canada is neither an affiliate, chapter nor division of the PRP Alliance. It would be more properly described as an outpost of the PRP Global Community.
The following is the initial framework for PRP Canada. Click any link to learn more.
Remember, if you are a Canadian diagnosed with PRP or a caregiver of a Canadian diagnosed with PRP, you may join PRP Canada at anytime.
What are the data points we track? What data points do we have? What data points are missing. This should NOT a comparison of the metrics associated with the USA or Globally. The objective is to build as complete a database for Canada as possible. Canadians will be asked to complete the PRP Global Census.
The PRP Survival Guide outlines how a PRP patient can find a dermatologist in the US. The American Academy of Dermatology’s Find-a-Derm program is more robust than the Canadian Dermatology Association. What advice can you give Canadians? Also, begin building a Registry of PRP-savvy dermatologists.
There are four “treatment” categories: retinoids, immunosuppressants, biologicals, and no meds. The objective here is to get Canadians to complete the What Works Survey.
When a Canadian is diagnosed with pityriasis rubra pilaris, is there a national treatment protocol? In New Zealand, for example, all things equal, the first prescription is for 25mg of acitretin. What options are available to Canadians to access affordable treatment options? We take the position that treatment must be affordable in order to be accessible. This may end up being anecdotal research.
What options are available to Canadians to get financial relief and support for Canadians? The first pass should be to see how difficult it is to get answers? Create lists with addresses and contact information.
Learn what you can about IADPO, CORD, CSPA, the Rare Disease Foundation and any other organization based in Canada that gets on our radar. The goal is to demonstrate that you know what is going on among patient advocates. Resist getting involved until 2021. Limit yourself to fact finding.