Porphyria Community

Meet, discuss & support other patients or families living with Porphyria. Contribute to topics, or just share what's on your mind

Why is so hard to find our treatment everywhere?

I want to share a frustration lol. Why is so hard to find our treatment? In resume I wanted to live in Mexico.. I launched a legal process and I lost. I have an opportunity to move in Canada but I was explained how can be hard to receive the treatment in a timing manner.. My last one! An offer in Australia where according to the Porphyria association it can take up to 8 days " minimum" for the approval only and from there to order the medicine.. so, I live in Belgium where I just have to give a call or go to urgencies and receive the treatment in less than 1hour.Don't take me wrong I love Belgium but, why it has to be soooo complicated every where else!
I just stop looking for opportunities because there is not place for a person with Porphyria. Grr :(.


I know how frustrating it is to access to treatment in different countries...

Have you contacted Porphyria Canada and Porphyria Mexico? Maybe they can give you more specific information about medicine access in these 2 countries.