Long-term treatment with Givlaari (givosiran) lessens rates of porphyria attacks, eases pain, and improves quality of life in…
Articles by Marisa Horak, MS
By February, eligible acute porphyria patients in England are expected to have access to Givlaari (givosiran) through the country’s National…
Experts will discuss the latest research related to porphyria, as well as current and emerging treatments and management strategies,…
Most people with porphyria who responded to a U.S.-based online survey report being generally satisfied with their treatment plan,…
The Assistance Fund (TAF) is accepting new eligible patients in the U.S. into its financial aid program for porphyria.
A baby girl was found to have congenital erythropoietic porphyria, highlighting the importance of closely examining the bone marrow for…
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for…
Abdominal pain and nausea in a woman having an acute porphyria attack was initially misdiagnosed as a natural response…
Applications are now open for Find Your Shadow 2021, an adventure program from Shadow Jumpers that aims to help…
Note: This story was updated on Feb. 2, 2021, to note that cutaneous symptoms are more common in VP and…