What is Porphyria
What is Porphyria
Mar 20, 2021
weebly.com
There are tests your doctor can perform to help confirm if you have acute hepatic porphyria (AHP)
There are tests your doctor can perform to help confirm if you hav…
Apr 5, 2019
porphyria.com
Information about Porphyria | Alnylam
Information about Porphyria | Alnylam
Nov 23, 2018
alnylam.com
CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and eyes. For people like Justin, CEP means living fully covered to survive the sun. It means adapting daily life, losing abilities over time, and facing a disease with no true treatment, only ways to manage the damage. Most people have never heard of CEP. This is why it matters 💜 Sharing Justin’s story is about visibility, un
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This is the first time we are sharing a story of someone living with ALAD Porphyria (ADP)
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