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APF Volunteers come together to raise Porphyria Awareness

We want to send a big thank you to our longtime APF member and longstanding volunteer, Amy Chapman....


 Amy Chapman

Amy Chapman, who has AIP, has been a major force for the APF.  She has been a volunteer Administrator on our APF Facebook support groups since their inception and in that capacity reaches out to each of the 1,000 plus members.  Amy has graciously shared her experiences, and knowledge of valuable resources provided by the APF.  Amy also writes the APF Purple Light blog

Amy has shared her AIP story on a video for national media.  You can view Amy's video on the APF YouTube channel:   PorphyriaFoundation

For this year's National Porphyria Awareness Week, Amy Purchased items to sale to raise money and awareness for Porphyria.  Many of the items have the APF logo on them and 100% of the profits went to the APF to advance Physician Education.  Orders still can be placed through May 6, 2013. To view these items and learn how to order go to:  Amy's Fundraising Event.

Thank you to all of our APF volunteers who did an amazing job of raising porphyria awareness from placing Awareness Week posters on their Facebook pages to hosting Health Fairs and more.  Watch the APF Enews for the next wonderful story about the young Cook brothers and their family efforts to enhance porphyria awareness with their HAT DAY event.

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…