There are two Porphyria support groups on Yahoo! :
better of the 2)
(Of the 400+ members on each group, only about 20+ post regularly. Strong evidence that a number of lurkers are corporate
"spies" for US chemical and pharmaceutical companies.)
For best information on Porphyria (IN THE USA) the HIGHEST RECOMMENDATION goes to:http://members.tripod.com/~PorphBook/
Also HIGHLY RECOMMENDED: (In Canada): http://www.cpf-inc.ca/
This one is highly informative and very supportive.
In New Zealand:
In Australia: http://www.uq.edu.au/porphyria/
For Europe and the UK: http://www.porphyria-europe.org/index.asp
In South Africa: http://web.uct.ac.za/depts/porphyria/
This group IS NOT recommended (in the USA) :
http://www.porphyriafoundation.com/ It is supposedly the official USA one. It is not.