Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria
…and more!
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Meet Dr. Makiko Yasuda, Porphyria Researcher
One thing I love about science is you learn something, then new information comes up and it opens up a whole new set of questions.
Meet Dr. Karl Anderson
Everything you learn about the disease you learn from patients. It’s important to understand how the disease really affects people, how the treatments benefit people, and for that you really need to listen to your patients.
Meet Ariel Lager, UPA Director
Everything about my life before diagnosis: my job, my family, my friends, were not places where it felt like my new diagnosis fit and they were certainly not places and people who understood what I was going through.
Meet Craig Leppert, Shadow Jumpers Founder
I realized that my condition with the sun was either going to define my life or become a cool addition to the story of my life
Meet Colin McEwen, Porphyria Advocate
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
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
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
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
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
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.
Meet Dr. Amy Dickey
My connection to porphyria is a bit more personal than a lot of other researchers. I have EPP porphyria.
Meet Dr. Manisha Balwani
Seeing patients and how it impacts them day-to-day, and how their families' lives are impacted, it’s a different level of understanding.