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2 members, 10 messages added in the last 7 days

Group Description

This is a list for people with Porphyria. We care! Friends, families and caregivers are also welcome. It is a group for support and information exchange with a specific focus on education, research and helping new patients with Porphyria. Porphyria is a disease caused by a defect in the heme metabolism. Posts to this list are not intended to provide medical advice. Porphyria patients should check with their physician before deciding if the information or advice on the list is suitable for their type of Porphyria.

This list is also directly associated with the Cure Porphyria Organization, a NJ non-profit organization that was formed to raise funds for research for a cure for Porphyria (awaiting 501(c)3 status). We need to help each other help ourselves. The Cure Porphyria Organization is focused on helping through finding a cure. We endorse a research study to find the cause of nerve damage in people with Porphyria (A UMDNJ Neurologist donates his time and resources).

No spamming, flaming or petty squabbles shall be permitted at any time. The people on the list have a difficult enough time with the disease and do not need any other stress.

As we said above, this group is dedicated to providing support for people with the rare disease Porphyria, and as a group where people discuss medical issues, we expect that all communication on the list is and will remain confidential. This group is protected by copyright and other legal principles. Everything that is said on this list is confidential. We protect the privacy of members using any means necessary, including legal action. All membership data is private. Do not join this group to collect information about our members! We do not tolerate SPAM, flaming or arguments of any kind.

Group Information

  • 927
  • Porphyria
  • May 14, 1999
  • English

Group Settings

  • This is a restricted group.
  • Attachments are not permitted.
  • Members can hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages from new members require approval.
  • All members can post messages.

Message History