Survey for PNH Patients and Carers/Family Members for NICE Appraisal – closes 21 August 2020
28th July 2020
Dear PNH community living in the UK,
We need your help!
As some of you may be aware, the National Institute for Health and Care Excellence (NICE) is currently appraising the drug Ravulizumab (Ultomiris) to decide if Ravulizumab will be funded as a treatment for adult PNH patients (18 years plus) in England, Wales and Northern Ireland (read more about the process here
As a patient organisation, PNH Support is a stakeholder in this process and needs to collect evidence from PNH patients and their carers to make a submission to this appraisal. Our submission is due on 8 September.
If you are a PNH patient (whether on treatment or not) or a carer/family member of a PNH patient and living in the UK, please complete the anonymous survey below.
The survey will take approximately 15 -20 mins to complete and closes on 21 August 2020. Please click here to take the survey.
If you are a PNH patient, please share this with your carer/family member to complete too and if you are a carer/family member please ask your loved one to complete this survey as a PNH patient. The information you provide is vital to the PNH patient/carer voice being heard in this very important decision.
If you have any questions, please email firstname.lastname@example.org. If you would like a hard copy of this survey for yourself or carer/family member to complete, please let us know.