This questionnaire is being carried out by the British Porphyria Association for the benefit of people with EPP.
SCENESSE® is an implant used to treat patients with Erythropoietic Protoporphyria (EPP), a rare disease that causes intolerance to light. The process for getting Scenesse approved for use on the NHS in England has gone through many stages already. Despite immense efforts by the BPA, the Final Evaluation Determination does NOT recommend Scenesse for approval. We have one last chance to appeal this decision and WE NEED YOURINPUT to do this. Please help us by answering this very short questionnaire to help us gain quality data to support the appeal process.