24 May 2024

Zoom


NICE has received an appeal against the Final Draft Guidance on the above technology from the following organisations:

  • Niemann-Pick UK

A second organisation will also be accepted as an appellant if the final scrutiny process confirms that at least one of their appeal points fall within the grounds for appeal.

The appeal panel will convene on Friday 24 May 2024 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, indicating which day you wish to attend. 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 will close at 4:00pm on Friday 17 May 2024.
  • 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 – Lyn Davies.

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

REGISTRATION IS NOW OPEN

Register here:

Olipudase alfa for treating Niemann-Pick disease types A and B [ID3913]

As you have registered directly for the webinar on Zoom please make sure you have noted the meeting date and time in your diary. You will receive confirmation with your joining links and further information once registration has closed.