Author Archives: Marisa Wexler MS

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…

Applications Open for EPP Program Find Your Shadow 2021

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…