Through a collaborative approach to research support, the UPA is focused on improving diagnosis, therapies, understanding of the disease burden, and advocating for increased research funding that can benefit patients — with an ultimate goal of helping researchers find a cure for all porphyrias. The UPA is committed to bringing the porphyrias community the latest information from experts to meet your needs.
The United Porphyrias Association is proud to be the designated patient advocacy organization of the NIH-sponsored Porphyrias Consortium (PC).
The expert physicians of the PC provide expertise and experience in the diagnosis and management of patients with all the porphyrias. Each physician also serves on the UPA Scientific Advisory Board.
The PC shares that “Together with United Porphyrias Association, our only designated patient advocacy group, the Porphyrias Consortium enables a large-scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders.”
This team of dedicated porphyria specialists include 6 Porphyria Centers and 7 Satellite Porphyria Centers across the United States. UPA engages with each center daily – referring patients, requesting responses to patient questions and concerns, and connecting for peer-to-peer physician consults, and recruiting for current research surveys and studies!
Porphyria patients are at the center of all porphyria research! There are multiple studies going on NOW that need your patient expertise.
Check out Latest News in Research projects and recruitment and how to participate:
Latest News - United Porphyrias Association