A specialized, sun-safe weekend camp helped children and young people with rare light-sensitive disorders safely experience the outdoors and connect with peers facing the same daily challenges, according to a recent study. The Alfresco Residential camp, held at Thorpe Woodlands in Norfolk, U.K., in late 2024, gave young people…
Discussion
My heart is so full, as is my head! Just a few weeks have passed since we held Porphyria Palooza, a gathering organized by the United Porphyrias Association (UPA), where I serve as president. This year’s event brought together patients and caregivers of every type of porphyria, as…
Discussion
Disc Medicine’s experimental oral therapy bitopertin significantly reduced levels of protoporphyrin IX (PPIX), a light-sensitive molecule, and significantly increased pain-free time in light in a Phase 3 trial involving people with erythropoietic protoporphyria (EPP). That’s according to top-line data from the global Phase 3 APOLLO trial (NCT06910358),…
Discussion
What would you do in a zombie apocalypse? The answers might vary, but they usually look something like this: Stock up on food and water. Gather family and friends. Find shelter. Figure out how to defend yourself. But when you have a chronic or rare illness like porphyria…
Becoming educated and informed about porphyria is a good first step. Here you’ll find general information about the disease, including the types, diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of some of our columnist’s words of wisdom to help you along on your porphyria journey.
There is no cure for porphyria yet, but there are therapies that can help manage the disease. Here you can find more information about some of the approved treatments for porphyria.
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