Author Archives: Marisa Wexler MS

International Study Finds Signs of Kidney Damage in AHP Patients

People with acute hepatic porphyria (AHP) tend to have higher-than-normal levels of markers for kidney injury, new research suggests. The findings were shared in a virtual poster, titled “Renal Injury Biomarkers Are Elevated in Acute Hepatic Porphyria,” presented at the American Society of Nephrology Kidney Week…

Givlaari Access in England, via NHS, Now Expected by February

By February, eligible acute porphyria patients in England are expected to have access to Givlaari (givosiran) through the country’s National Health Service (NHS), for treating severe, recurrent disease attacks, according to an update from the British Porphyria Association. The announcement comes in the wake of a draft guidance…

Symposium Offers Research, Treatment Updates

Experts will discuss the latest research related to porphyria, as well as current and emerging treatments and management strategies, at an upcoming symposium. The event will include a free patient day, open to both in-person and virtual attendees. “The Porphyrias Symposium … will bring together Porphyrias experts, treating…

TAF Financial Aid Program Accepting New Porphyria Patients

The Assistance Fund (TAF) is accepting new eligible patients in the U.S. into its financial aid program for porphyria. The program, which was launched last year, helps individuals to pay for out-of-pocket costs associated with treatment. Financial assistance applies to copays, deductibles, and coinsurance for approved medications; costs…

Bone Marrow Exam Can Be Crucial in Diagnosing Rare Porphyria

A baby girl was found to have congenital erythropoietic porphyria, highlighting the importance of closely examining the bone marrow for diagnosing this rare form of porphyria. Her case was described in the study, “Bone marrow erythroid cell inclusions reveal congenital erythropoietic porphyria,” published in the…