15 May 2023

via Zoom

NICE has received an appeal against the Final Evaluation Document on the above technology from the following organisations:

  • Clinuvel
  • International Porphyria Patient Network (IPPN)

The appeal panel will convene on Monday 15 May 2023 at 10:00am to hear oral representations from the appellants. This will be a virtual appeal hearing webinar via the secure online conferencing tool, Zoom.  

Please read this important information on how to register for the webinar

  • Click on the register link at the bottom of the page and complete the Zoom registration form. Please register with your full name as this is how it will be displayed during the hearing. 
  • You must use the email address that you are registering with to join the hearing. Please ensure you type in the correct address. Also check that if you are using a work email address, that it supports the use of Zoom. If in doubt, use a personal email address.
  • Registration closed at 4:00pm on Tuesday 9 May 2023.
  • You will receive your invitation and joining link for the webinar via email once registration has closed. You will be able to add the link to your calendar.
  • You will be sent reminders up to an hour before the start of the webinar.
  • We may not be able to accept any late requests or name changes after registration closes.
  • As a public observer, you will be able to listen to the business of the hearing, however, you will not be able to participate in the  discussions or ask questions, or put your views to the members of the appeal panel.
  • Should you have any queries regarding observing this hearing, please contact the Corporate office - Emma Gordon

Privacy Statement - We use Zoom to host our webinars. When you join a zoom webinar, your name, email and IP address will be processed. We ask for this data to help facilitate the event and monitor attendance. If the webinar is being recorded you will be notified beforehand by the webinar host/organiser and during the webinar will see an onscreen notification in Zoom when recording starts/stops. We will store your personal data/recordings for the minimum amount of time securely within Zoom which will be for 6 months, after which it is automatically deleted. Any webinar recordings may be extracted and stored securely at NICE for a longer period and your webinar host/organiser will confirm this as part of your invite. We will only do this if this is absolutely necessary. Further information about how we manage personal data at NICE can be found on our privacy notice. - https://www.nice.org.uk/privacy-notice


As you are registering directly for the webinar on Zoom, your place is guaranteed but please make sure you have noted the meeting date and time in your diary as you  will only receive the invitation with your joining links and further information after registration has closed on 9 May.