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If you have ever asked a question about your type of porphyria only to have a physician respond with “I don’t know,” you are a candidate to participate in research. The American Porphyria Foundation is actively recruiting research volunteers for all types of porphyria. We are calling on our patient members to boost the number of volunteers that participate in these studies. The government grants that fund rare disease research, through the National Institutes of Health, support a limited number of disease groups like porphyria. A critical area for assessment to fund a rare disease group is the number of participants. If there is not proof of steady growth in the number of research volunteers, we risk losing critical funding that supports our Porphyria Centers across the US. To secure ongoing funding, we urge you to participate. It is easier than you may think! We understand that it is an important and personal decision, but if not you ...then who???   If you are interested in volunteering for any of these studies, please contact Edrin Williams, Director of Patient Services, at edrinw@ for additional information. Some available opportunities: » Longitudinal Study (All Porphyrias) » Harvoni Study (PCT) » Panhematin® Prevention Study (AIP, VP and HCP)



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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…


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Happy Winter Season!

                  Happy Winter Season!