Dr. Karl Anderson, Porphyria Expert at UTMB is seeking patients who receive prophylactic heme treatment and the treatment has been working for them. For instance, you may be receiving heme weekly, bi-weekly or once a month to prevent attacks and the treatment has been successful. We are risking losing critical research funding that supports our Porphyria Centers across the US. We can’t do this without you. In order to secure ongoing funding, we urge you to participate.
Dr. Anderson has helped us all in some way. Let’s return the favor and participate in this important research!
Inclusion criteria for the Panhematin Prevention Study:
- Need to have well-diagnosed and documented AIP/HCP or VP with lab results
- Had previous attacks of porphyria with symptoms such as abdominal pain, back or limb pain.
- Currently on a regimen of Panhematin infusion to prevent acute attacks.
Travel to the study site is included.
If you are interested in participating please reach out to Edrin Williams, APF Director of Patient Services.
APF OFFICE: 1.866.APF.3635 or 301.347.7166