The Global Porphyria Advocacy Coalition (GPAC) announced that an international database focused on the safety of medications for people with acute porphyria is now available in Spanish. People with certain types of porphyria may experience attacks of worsening symptoms after using certain commonly prescribed medications. The Norwegian…
Discussion
My work is both personal and professional for me. That is one of the beautiful and complicated gifts of rare disease advocacy. I do this work as the president of the United Porphyrias Association (UPA). I also do it as Brady’s mom. And that little boy, my “baby,” who…
A blood stem cell transplant, often called a bone marrow transplant, may effectively treat children with congenital erythropoietic porphyria (CEP), although complications remain common, according to a French study. The researchers found that the procedure, also known as HSCT, for hematopoietic stem cell transplantation, resolved disease symptoms in most children,…
May 18 is Global Porphyria Day, and advocates worldwide are planning several initiatives to raise awareness of this group of genetic diseases — and improve understanding of the challenges of living with porphyria. “As a rare disease, porphyria is often unheard of, unseen and misunderstood,” the United Porphyrias…
Becoming educated and informed about porphyria is a good first step. Here you’ll find general information about the disease, including the types, diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of some of our columnist’s words of wisdom to help you along on your porphyria journey.
There is no cure for porphyria yet, but there are therapies that can help manage the disease. Here you can find more information about some of the approved treatments for porphyria.
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