Information for the public
Afamelanotide (Scenesse) is not normally available on the NHS for preventing phototoxicity in adults with erythropoietic protoporphyria. Your doctor should talk with you about other treatment options. If you are already taking it, you should be able to continue until you and your doctor decide when best to stop.
Information and support
The British Porphyria Association (0300 30 200 30) can give you advice and support.
You can also get support from your local Healthwatch.
NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.
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