This patient association for people with porphyria was founded in 2003. It is a community for learning to live with the condition and avoiding serious symptoms. It shares knowledge among members and carriers and collects and passes on information about porphyria.
It is a member of RareConnect, Sjældne Diagnoser, Eurordis and GPAC, and works with porphyria associations in other countries. The community meets in a Facebook group and at member meetings. The association takes part in conferences on porphyria and international research, and publishes brochures and anonymised personal stories. Members can sign up for a newsletter.
