For most families, a sunny day is a source of joy, but for the family of five-year-old Evie-Rose, sunlight brings distress and fear. As was reported in the Scottish Sun,…
Porphyria refers to a group of rare disorders that cause issues with the production of heme, which is part of what makes up hemoglobin (a protein in your red blood…
Living with a rare disease is difficult for so many reasons. One of the lesser talked about struggles of living with a rare condition is the fact that so few…
Janet Woodcock, Director of the FDA’s Center for Drug Evaluation and Research (CDER) recently gave an interview to the publication FDA Voices about the agency’s approval in 2019 of a…
EPP Erythropoietic protoporphyria (EPP) is a rare disease that causes extreme light sensitivity. This sensitivity is so extreme that being outside is extremely difficult for patients and many only come…
According to CheckOrphan, Clinuvel Pharmaceuticals recently announced that their drug Scenesse has received a Prescription Drug User Fee Act (PDUFA) date from the FDA, set for July 8th of this…
The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…
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