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Join Rare Connect, Why? & What It Is!

What is Rare Connect?  Once you sign up it's free and you become a  member.  You are Connecting with Patients of Rare disease Globally!  There is Information from many of the Porphyria Centers worldwide, we ask questions, we talk, we read and join in excellent conversations!  So if you see any familiar faces say "HI" and become friends and if you or know someone with another disease join that group to.  We are excited for all of you to join in this process.  All groups are monitored and all have good guidelines to follow and it's so simple to use.  If you have any problems or signing up please contact and she will be happy to assist you.

   "Research is the Key to Your Cure"


Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.Come in and learn more >
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Our Communities

Our Communities
Find an online community for your area of interest. Meet, interact and learn from your peers and medical experts. We have 39 rare disease communities with more to come soon!

Join RareConnect

Join RareConnect
Meet and interact with others who share your condition in a supportive and friendly environment. Find the information and support you need and share your own experiences.

Member Story

Read Vittoria's Story
Vittoria's Story - Hello my friends, my name is Vittoria and I am very happy to make your... Read more >


  • 4th International WM Patient Forum4th International WM Patient Forum - WMUK will be one... More >
  • Wochenendseminar für Betroffene und Familien mit Tyrosinose Typ 1 und AlkaptonurieWochenendseminar für Betroffene und Familien mit Tyr... More >
  • 2nd Meeting of VHL Patient Group Leaders - For furthe... More >
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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…


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…

Happy Winter Season!

                  Happy Winter Season!