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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…

What We Get for Staying Sick and Victimized

My acute hepatic porphyria (AHP) diagnosis was a whirlwind that transformed my life and the lives of my loved ones. It took a series of dramatic attacks for doctors to take me seriously. Sadly, this is not uncommon for people with AHP. After nearly two decades searching for answers, I…

Let’s Keep Rare Disease Day Momentum Going

Rare Disease Day, observed yesterday, involved many awe-inspiring and well-organized virtual events attended by people from all over the world. This annual day of observance generates awareness about some 7,000 known rare diseases and over 300 million people who live with them. According to Global Genes, about 80%…

This Rare Disease Day, Only Share Your Story if You’re Ready

Every February, my inbox fills with information about Rare Disease Day webinars, forums, and promotions. On social media, patients and caregivers raise awareness through campaigns such as #ShowYourStripes or #ShareYourRare. In Washington, D.C., advocates from around the country gather virtually and in-person to ask their members of Congress for…