Porphyrias Consortium Longitudinal Study

The NIH-supported Porphyrias Consortium (PC) consists of six Porphyria Centers and seven Porphyria Satellite Centers across the USA.  One of the CRITICAL studies that the PC implements is the Longitudinal Study (LS).  The LS is an observational study that seeks to learn more about the natural history in patients with acute and cutaneous porphyria. You can find detailed information here: https://www.rarediseasesnetwork.org/cms/porphyrias/7201

Have you already participated in the Longitudinal Study? If so, it may be time to update your information with the research coordinator at your participating site. 

If not,

All porphyria patients (adults and children) with a confirmed diagnosis are eligible and encouraged to participate. Please contact Edrin Williams via email at edrinw@porphyriafoundation.org or via phone at 301-312-8741 to contact the study coordinator at the participating location nearest you. 

“REMEMBER…RESEARCH IS THE KEY TO YOUR CURE!”