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Sign UP its free, Lifesaving. Porphyria Invite.

I wanted to take a few moments to suggest signing up for these groups.  These groups are designed for you at no cost.  

When you sign up for the you are signing up to participate in research projects answering questions about your type of Porphyria, you have questions, your chance to support these programs for possible medications and cures are so necessary.  These are great Expert Doctors that are interested in learning about you and your family.  Sometimes it’s a simple process of answering questions, a phone call, a trial drug, or a blood  & urine sample!  So please sign up and explore this site.

Next we have the  This is supported by the American Porphyria Foundation.  It is also free to join.  Learn  about upcoming events, read members stories, be encouraged that you are not alone.  Try a recipe, learn some tips from the Experts.  Be INVOLVED!

Do you enjoy interacting with other patients, doctors from all over the world that also have Porphyria?  I know I do.   When you sign up for free to a program called: RareConnect~ you can find diagnosed Patients with all types of people all over the world, new and exciting news, learning opportunities, announcements, how medicine and trials are making progress, start discussions get answers. Learn how Porphyria affects each one of us.

So what are you waiting for, please join your support, experiences and encouragement are what we all need.  Please show your support for such programs they may not always be available to us.

Remember.....Research is the key to your cure!


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Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…