RESEARCH. IF NOT YOU, THEN WHO?
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@ porphyriafoundation.org for additional information. Some available opportunities: » Longitudinal Study (All Porphyrias) » Harvoni Study (PCT) » Panhematin® Prevention Study (AIP, VP and HCP)