The UTMB Health Porphyria Center has a longstanding interest in the human porphyrias. We focus on research and development of new therapies, and on strengthening the evidence for existing therapies.
Because there are few specialists nationwide with the adequate
experience to diagnose and manage porphyria, we provide advice to
patients and physicians to improve the accuracy of diagnoses and improve
treatment. This engagement with the extended community of porphyria
patients also helps us to highlight issues for further research.
We primarily design and conduct prospective studies, and these require significant numbers of well-characterized patients with whom we have positive ongoing relationships. The services we provide have helped us to be able to recruit the numbers of patients necessary to conduct our research.