April 19, 2023 will be recognized as Global Porphyria Day, a time to spread awareness about porphyria, a rare disease, among the general public and the medical field. This year,…
Porphyria refers to a group of rare disorders that cause issues with the production of heme, which is part of what makes up hemoglobin (a protein in your red blood…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…
In a recent article, English entertainer Tommy Steele has revealed what it was like being diagnosed with porphyria at a young age. Porphyria Porphyria is a group of disorders…
In a recent article at Porphyria News, Claire Richmond shares how writing has helped her process her diagnosis of porphyria and to feel connected to the porphyria community. Claire Richmond’s…
Sometimes, certain health conditions can increase the risk of developing other conditions. According to a new research study, this may be the case with porphyria and hepatocellular carcinoma. An article…
Living with a rare disease is difficult for so many reasons. One of the lesser talked about struggles of living with a rare condition is the fact that so few…
According to a recent article, last week was Porphyria Awareness Week, a week dedicated to recognizing and uniting those who are a part of the porphyria community. Porphyria Porphyria is…
Awareness and advocacy are extremely important to every rare disease, and porphyria is no different. That's why we celebrate Porphyria Awareness Week (PAW) every year from April 2nd until the 9th.…
In late October 2021, the National Institute for Care and Excellence (NICE) in England recommended Givlaari (givosiran) to treat patients with acute porphyria -- or, more specifically, to treat patients…
When a 23-year-old woman, who was 6 weeks pregnant, first appeared at the doctor, she was presenting with non-specific symptoms: pale eyelids, abdominal pain, intermittent cramping, and generalized arm and…
A recent study, titled "Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed method study," investigated the disease burden faced by AHP patients and…
According to BioSpace, a consulting firm called Fact.MR has conducted a study into the market for acute hepatic porphyria (APH). The point of this study was to understand the future…
My name is Megan and I live with acute hepatic porphyria (AHP). My health journey began with the arrival of puberty. I started to experience terrible nausea and abdominal pain…
Porphyria is a rare blood disease, with less than 20,000 cases in the U.S. every year. Because of this rarity, many people are unaware that the symptoms they experience have…
According to a press release from Alnylam Pharmaceuticals, the Massachusetts-based biopharmaceutical company has completed the submission of its New Drug Application (NDA) for givosiran — its experimental acute hepatic porphyria…
According to a story from Rocket News, the class of drugs known for their "gene silencing" mechanism of action appear to be effective in treating porphyria, a rare disease that…
Topline results have been shared from a Phase 3 study of the investigational drug givosiran in patients with acute hepatic porphyria. For more detailed information you can view the source…
According to a story from Medical Xpress, an international group of scientists from the US, France, and Spain may have discovered that an antifungal agent commonly used to treat skin…
Suffering alone with a rare, chronic condition is a terrible thing. But thanks to the National Porphyria Registry people living with this vexing disease have a way to stand up,…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
