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Applications are now open for Find Your Shadow 2021, an adventure program from Shadow Jumpers that aims to help children with erythropoietic protoporphyria (EPP) try new things they otherwise would not do because of their disease. EPP is a type of cutaneous porphyria — a porphyria that…

People with variegate porphyria (VP), one of a group of related disorders, carry a significantly heavier disease burden — the overall impact of a medical disorder on a patient’s life — than those with hereditary coproporphyria (HCP), primarily…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

A case report describes the successful diagnosis and treatment of porphyria cutanea tarda (PCT) in a man presenting with a history of untreated hepatitis C. The case report, “«They Won’t Let Me Return to Work.» A Carpenter Diagnosed with Porphyria Cutanea Tarda,”…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

Note: This story was updated on Feb. 2, 2021, to note that cutaneous symptoms are more common in VP and HCP than in AIP or ADP. The American Porphyria Foundation is joining with others in asking people with acute hepatic porphyria to participate in the Porphyria Worldwide Patient Experience Research (POWER)…

Radiation therapy for a woman with vaginal cancer completely resolved co-existing porphyria cutanea tarda (PCT), a form of porphyria that affects the skin, a case study reported.  The case study, “Porphyria cutanea tarda exacerbation as…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Pretreatment with hemin helped treat a bacterial Helicobacter pylori (H. pylori) infection in a woman with acute intermittent porphyria (AIP), a Japanese case study reports. The treatment protocol outlined in the report was safely administered to a patient with a history of recurrent…

A liver transplant is effective and is associated with high survival rates in people with acute intermittent porphyria (AIP), a study reports. However, severe neuropathy, or nerve damage, and chronic kidney disease increase the risk of poor…