Closed petition Fund afamelanotide on the NHS to treat erythropoietic protoporphyria

Closed on 16 February 2019

Erythropoietic Protoporphyria is a life changing genetic condition, your body has a reaction when exposed to UV and visible light. You can't go out without covering head to toe, just to be able to leave the house. Inside all blinds must be closed, also lights to be checked. No prevention or cure.

Reactions mean weeks of agony. You feel like your blood is on fire, pain beyond words that no medication touches. Skin dries and cracks. You can’t talk, eat, and struggle to drink. It can also lead to liver failure and Vitamin D and iron deficiencies.

There is a treatment that works and other countries are using it but NICE has said no, because it’s too expensive. We are pleading for the government to fund this treatment and give EPP sufferers a chance of a normal life