Porphyrias Consortium

What's UP Doc?
Written By Dr. Hetanshi Naik

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

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.

Thank you to Dr. Naik for this What's UP Doc? answer! Do you have a question for a porphyria expert? Send it to info@porphyria.org.

 

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Dr. Hetanshi Naik
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