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 YOUR INPUT to do this. Please help us by answering this very short questionnaire to help us gain quality data to support the appeal process.

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* 1. Do you have a confirmed diagnosis of Erythropoietic Protoporphyria (EPP or XLEPP)?

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* 2. Where do you live?

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* 3. If Scenesse were to be approved for use on the NHS in the UK, would you try it to see if it worked for you?

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* 4. On a scale of 0 to 10 (where 0 is not affected at all and 10 is extremely affected), how does EPP affect your life in the following categories?

  0 1 2 3 4 5 6 7 8 9 10
Family life
Engaging with friends
Work or study
Finance

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* 5. Based on what you know already about Scenesse and your perception of how it may work, how do you think EPP would affect your life after treatment withScenesse? Where 0 is not affected at all and 10 is extremely affected.

  0 1 2 3 4 5 6 7 8 9 10
Family life 
Engaging with friends
Work or study
Finance

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