Columns

A Meeting of the Minds to Advance Porphyria Research

Last weekend, we welcomed the expert physicians and researchers of the Porphyrias Consortium to the United Porphyrias Association‘s home base in Bethesda, Maryland, with the goal of networking and brainstorming about how to move porphyria research and knowledge forward. The event marked the first in-person meeting of this…

How I Avoid the ‘Sick Olympics’

Acute hepatic porphyria (AHP) is a complex rare disease that takes up a lot of brain space. Nothing is more exciting than when I can tell someone who actually understands it about how it feels, acts, and responds. Venting and story sharing are one thing. Living in perpetual…

Spring Can Be a Challenge for Those With EPP

With spring upon us, the birds are singing earlier in the morning. The flowers and trees will soon bud. Our clocks have already “sprung” forward. The air is warm, and the sun shines brighter and longer than it has in months. But for some, the signs of spring…