Tuesday, January 9, 2018

PSA: ‎Liz Gill‎ to British Porphyria Association

Liz Gill to British Porphyria Association

Did you take part in a trial of Scenesse? We need your help!
NICE recently made a preliminary recommendation not make Scenesse available on the NHS in England. We are responding to their consultation document and need your help to make sure our response is as complete as it can be. Amongst other things, we are trying to demonstrate that the positive experiences of Afamelanotide are representative of most of those who were on the trial. But to do this we need to speak to people who were on any of the Scenesse trials to tell us how it affected them. Please get in contact on helpline@porphyria.org.uk or 0300 30 200 30. Or post a few sentences here.
THANK YOU for your continued support.

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