Information pertaining porphyria is dispersed on a myriad of sites, groups and scientific publications, with the result that it is difficult to have an overview as to deepen the details or to find texts and sites after a certain time.
I am an active carrier of AIP and a chemist, so I collected a lot of infos on Porphyrias, spreaded on Internet, generally unknown ar misunderstood, but – not rarely – essential. And I started to keep them in order and link them, as published on this site, without any obligation of continuity and for my personal use, noting, eventually, my reflexions.
- link to a suggested Facebook Group (NOT by me administred) + link to the original “Mapping Porphyria, the unchecked disease” Facebook group + link to Mapping Porphyria Channel (a listed video collection)
- scrollable menu “Infos /basic”, about the essential knowledge as spreaded by most authoritative sites
- scrollable menu “Infos /specs”, about more detailed or related aspects, as on healthcare or welfare
- scrollable menu “Topics”, about some topic questions and /or Faqs
- right sided menus (if you use a pc), about posts to advertise case studies and / or researches published on authoritative sites.
Not patients, not carriers, just people.
Thanks to American Porphyria Foundation, European Porphyria Network, NAPOS Drug Database. for Acute Porphyria, Recordati Rare Disease, Orphan Europe, Merck Pharmaceuticals for the authoritative medical information: they save our lives.
For any question, scroll – please – to the bottom of this page and read the disclaimers.
Have a nice trip.