experts in action

What's UP Doc? Porphyrias Consortium

  • Apr 22, 2022
  • Acute Porphyrias, CEP, EPP/XLP, PCT, What's UP Doc
  • Dr. Hetanshi Naik


What's UP Doc? Is a monthly column where we feature a patient question along with a response from a member of the UPA Scientific Advisory Board.

Do you have a question you would like to ask a Porphyria Expert?  Send us an email at We’d love to hear from you!

What is the Porphyrias Consortium? Why is it so important? What do they do?

This week our response was provided by Dr. Hetanshi Naik, who not only is a member of the Porphyrias Consortium, but also serves on UPA’s Board of Directors. 

The Porphyrias Consortium (PC) is a group of porphyria experts across the US who have come together and formed a group dedicated to improving patients’ lives by conducting research for all the porphyrias, as well as training new porphyria specialists. It is the first group of its kind dedicated solely to the porphyrias and the PC physicians and investigators work closely with the UPA. More information on the PC can be found on our website.

The currently ongoing studies that the PC is doing can be found here. These studies are designed to help us learn more about the porphyrias or test certain treatments so we can better care for patients.