experts in action

Porphyria Experts in Action

The United Porphyrias Association is proud to work closely with the porphyria experts on the UPA's Scientific Advisory Board and at the Porphyrias Consortium. 

We're pleased to introduce our Experts in Action where we'll feature:

  • Summing UP: Easy-to-understand summaries of recent and important scientific research
  • What's UP Doc? Where the experts answer your questions
  • Meet your experts: Where we get to know the experts a little better
  • Special events and recordings
  • New research opportunities
  • And more....

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What's UP Doc?  Givlaari for acute porphyria
What's UP Doc? Givlaari for acute porphyria
June 17, 2022
By Dr. Bruce Wang

Question: I am thinking about starting Givlaari injections. What tests should I have done before and during my treatment?

What's UP Doc - Confusion during acute attacks
What's UP Doc? Confusion during acute attacks
May 20, 2022
By Dr. Karl Anderson

Question: I have Variegate Porphyria – why am I confused during an attack?

What's UP Doc?  How many people have porphyria
What's UP Doc? How many people have porphyria
May 6, 2022
By Dr. Brendan McGuire

Question: I understand that Porphyria is a rare disease and being recently diagnosed with AIP, I am trying to understand more and more. How many people in the US have porphyria? Which type of porphyria is the most common? The least common? How do you calculate these numbers?

What's UP Doc? Acute porphyrias and heart health
What's UP Doc? Acute porphyrias and heart health
April 29, 2022
By Dr. Herbert Bonkovsky, Dr. Karl Anderson

Question: Can having tachycardia (fast, irregular heartbeat) due to AHP cause long term health issues? If you have tachycardia from AHP, are there things you can do to protect your heart?

What's UP Doc? Porphyrias Consortium
What's UP Doc? Porphyrias Consortium
April 22, 2022
By Dr. Hetanshi Naik

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

What's UP Doc? Enzymes and porphyria
What's UP Doc? Enzymes and porphyria
April 15, 2022

What are enzymes and why they are important in the porphyrias?

What's UP Doc?  Making a health care team
What's UP Doc? Making a health care team
March 25, 2022
By Dr. Bruce Wang

Question: Can you recommend a list of specialties for acute porphyria patients, and a list of specialties for cutaneous porphyria patients?

What's UP Doc? CEP and dental care
What's UP Doc? CEP and dental care
March 18, 2022
By Dr. Angelika Erwin

Question: What extra precautions should I take when I am having my teeth cleaned or any dental work? I have CEP and want to talk to my dentist in advance.

What's UP Doc? Acute porphyria and homocysteine
What's UP Doc? Acute porphyria and homocysteine
March 11, 2022
By Dr. Manisha Balwani, Dr. John Phillips

What should a person with Acute Hepatic Porphyria know about homosysteine and is there guidance for patients to follow?

What's UP Doc? EPP and iron supplements
What's UP Doc? EPP and iron supplements
March 4, 2022
By Dr. Amy Dickey

Question: A lot of EPP patients are confused about taking iron supplements. What would you suggest?