Community Info

Community Information

Below is information about the "Porphyria Information and Support" community on LiveJournal. To join this community, click here. You may leave the community at any time.

Watch Community  To-Do List  Memories  Tell a Friend!  Search This Journal
User:porphyria_info (1080412)
Name:Porphyria Information and Support
About:This community is a place for porphyria patients, their friends, significant others, family members and health care providers.


I was inspired to start [info]porphyria_info after my own long and fruitless searches for porphyria communities online. I wanted to create a safe space on the Internet where porphyria patients could meet and share advice and information. I hope this community will fill that void.


If you're dealing with another illness or disorder that has similarities to porphyria, such as XP or PME, please feel free to join and post!


Welcome! We're here to listen and help.


Porphyria Resources and Information on the Web:



American Porphyria Foundation
Canadian Porphyria Foundation
Dutch EPP Foundation
NORD: National Organization of Rare Diseases
Basic Porphyria Information on Yahoo Health


Questions? Contact the community mod, [info]denisia.

Interests:22: acute intermittent porphyria, aip, blood disorders, cep, congenital erythropoietic porphyria, diagnosis, epp, erythropoietic protoporphyria, genetics, hcp, hep, hepatoerythropoietic porphyria, hereditary coproporphyria, pct, photosensitivity, porphyria, porphyria cutanea tarda, porphyries, testing, variegate porphyria, vp, xp
Maintainers:1: denisia
Members:17: animelily, denisia, gypsydaffodil, mustangkelley, newport12, niku213, nyxks, renwick, saenra, scattermew, schabernack, serpent_god, shawnys_grl, sweetjezebel, theeveningstar, violettfem, wylddelirium
Watched by:13: animelily, denisia, gypsydaffodil, jackbeninble, livi_short, nyxks, saenra, scattermew, schabernack, shawnys_grl, sweetjezebel, theeveningstar, wylddelirium
Account type:Basic Account

(more details...)


Create an Account
Forgot your login?
Login w/ OpenID
English • Español • Deutsch • Русский…