Skip to main content

International Meeting of Porphyria Patients

International Meeting of Porphyria Patients

The International Porphyria Patient Day, organized by the Swiss Society for Porphyria and the German EPP Patient Group, will be held on Saturday, May 18th, 2013 in Lucerne, Switzerland.

The primary objectives of the Patient Day:
  • networking between individual patients, their organizations and the scientific experts in the field of porphyria
  • sharing information on the latest research activities and clinical advances
  • discussing international collaborations between patient organizations and planning for an international umbrella organization to more effectively protect patients' well-being and promote their interests

The Swiss Society for Porphyria and the German EPP Patient Group would like to encourage representatives from the various international patient associations and individual porphyria patients to attend the Patient Day.  We hope to see many of you there: numerous participants will contribute to making this day an enriching and valuable event for the cause of porphyria patients around the world.

Some scholarship funding will be available, so if you are interested in attending and /or needing a small scholarship, please contact the APF toll free: 1.866.APF.3635

For details, please see:

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


Popular posts from this blog


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…


What could it be?
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…

Happy Winter Season!

                  Happy Winter Season!