Porphgroup is an on-line email list group which supports patients and family members of those suffering from, or who believe they have the genetic metabolic disease porphyria.

Porphgroup has been around for almost 5 years, it is the longest standing porphyria email list around. While there is another group calling itself Porph-group the two are not connected, but many members of groups often belong to other groups of the same name.

Here you will find others who have been through some of what you have and many have similar experiences.

This group does not serve instead of medical advice, and anything recommended by any member of this list should not be taken as medical advice, but first hand personal experience. Never try anything without first checking with your doctor.