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MAA Meeting BDFA Oct 2023

Dear Families,

Managed Access Agreement – Re-evaluation Submission

We would like to invite all Parents and family members from the CLN2 community to take part in a meeting to discuss the BDFA’s submission to NICE for the re-evaluation of Brineura, as part of the Managed Access Agreement.

This meeting will be with Joanna Nightingale, Head of Scientific Affairs, Liz Brownnutt, Interim CEO, Zlatko Sisic, Chair of Trustees and Sarah Kenrick, Family Support Partner.
The aim of the meeting is as follows:

  • To update you as to the next steps in the process
  • To discuss with you the evidence or information you may be able to provide which will be invaluable in shaping and informing our submission)

We would like to hold meetings on two dates to ensure that as many families as possible can attend this important update:

Monday 23rd October 5pm-6.30pm

Wednesday 25th October 5pm-6.30pm

To join one of the meetings, please click on the date above you prefer and this will take you to the event page to sign up. A confirmation email with the Zoom link for the meeting will then be sent to you.

If you have any issues with signing up, please contact Lisa at look forward to meeting with you.
Best wishes,
Liz and Jo

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