News

Activities Set to Mark Porphyria Awareness Week April 10–17

Activities are afoot to mark Porphyria Awareness Week — taking place April 10–17 this year — set aside annually to call attention to this group of inherited disorders that affect an estimated 1 in 500 to 1 in 50,000 individuals globally. Supporters are encouraged to engage in Zoom sessions and…

AIP Affects Quality of Life, Even With Infrequent Attacks

People with symptomatic acute intermittent porphyria (AIP) should be monitored regularly, as this disorder can affect their quality of life even if their attacks are infrequent. A recent study with that finding revealed evidence of significant chronic symptoms and long-term medical conditions among patients with sporadic AIP, as compared to…

Soleo Health to Administer Givlaari to Adults With AHP

Soleo Health announced it will start to administer Givlaari (givosiran), an injectable treatment by Alnylam Pharmaceuticals’ for adults with acute hepatic porphyria (AHP). “We are once again expanding our portfolio of infusible and injectable specialty pharmaceuticals to elevate our levels of quality patient care and therapeutic service offerings.

Regular Blood Removal Eased CEP Symptoms, Case Report Shows

A woman with the rarest type of porphyria, called congenital erythropoietic porphyria or CEP, was successfully treated by regular blood removal — a procedure called phlebotomy — which lowered her blood iron levels, reduced urinary porphyrins, and eliminated sun-sensitive skin blisters, a case study showed. …

Late-onset Form of EPP May Be Cause of Skin Reactions to Sun in Adults

Inherited, genetic late-onset erythropoietic protoporphyria (EPP), a rare form of EPP that usually manifests later in life, should be included when considering a diagnosis of adults with generally mild skin itching and rashes in sun-exposed areas, a review study proposed. The study, “Inherited genetic late‐onset erythropoietic protoporphyria: A systematic…