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....

Sign up to never miss a feature!

Meet Colin, Porphyria Advocate
Meet Colin, Porphyria Advocate
March 5, 2024

"I want to turn what I went through into something good, because otherwise it’s just suffering for the sake of suffering, and I can’t accept that. I want to do something more with my story."

Meet Honorable Joe Crowley, UPA Director and Former Congressman
Meet Honorable Joe Crowley, UPA Director and Former Congressman
February 22, 2024

"Building that connection with your elected officials can help sensitize them to that reality and keep them engaged in rare disease issues."

Meet Kristen Wheeden, UPA President
Meet Kristen Wheeden, UPA President
January 26, 2024

"Collaboration between patients, caregivers, advocates, expert physicians, industry partners and regulators is necessary to realize advancements in porphyria. All of us doing our important roles can lead to better diagnostics, new therapies and better quality of life for our patient community."

 

Meet Dr. Herbert Bonkovsky
Meet Dr. Herbert Bonkovsky
December 4, 2023

"With rare diseases, you could call every patient a clinical trial of one because each one is unique. It is important to listen to them and try to address their symptoms."

Meet Padmini Pillai, PhD and UPA President's Council Chair
Meet Padmini Pillai, PhD and UPA President's Council Chair
November 12, 2023

"You have to figure it out for your own body and trust that you know your body better than anybody else. I think that's where having a community of other patients and patient advocates is important because it can give you that confidence, security, friendship, and empathy that you're doing what's right for you."

Meet Dr. Manish Thapar
Meet Dr. Manish Thapar
October 17, 2023

"It’s been really eye-opening to see how important patient involvement is in rare disease.  Patients can drive the field, move the field. Rare diseases like porphyria are very life-altering. Patients have an important role in how the regulatory agencies and how physicians are looking at the disease and what the outcomes are."

Experts in Action - Meet Dr. Amy Dickey
Meet Dr. Amy Dickey
September 25, 2023

"My connection to porphyria is a bit more personal than a lot of other researchers.  I have EPP porphyria."

Experts in Action - Meet Dr. Manisha Balwani Medical Geneticist at the Icahn School of Medicine at Mount Sinai in New York.
Meet Dr. Manisha Balwani
August 24, 2023

"Seeing patients and how it impacts them day-to-day, and how their families' lives are impacted, it’s a different level of understanding."