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Zilucoplan

Zilucoplan is a potential treatment for generalised myasthenia gravis in adults who test positive for anti-acetylcholine receptor antibodies. It is manufactured by UCB.

Approval process 

The National Institute of Health and Care Excellence (NICE) is currently appraising zilucoplan. In July 2024 it published draft guidance after its first appraisal committee discussion. This guidance does not recommend zilucoplan for use as an NHS treatment option. You can read more about the draft guidance at NICE publishes draft guidance on zilucoplan for myasthenia gravis treatment – Muscular Dystrophy UK.

This is very common and triggered a public consultation which closed on 25 July 2024. As well as supporting individuals affected by myasthenia gravis to take part in the consultation, we made a formal joint submission with the charity MyAware.

Later this year there will be a second appraisal committee meeting which will look at the responses received from all stakeholders and any further evidence submitted by the company.

We nominated and supported two members of the community as ‘Patient Experts’ who took part in the first appraisal committee discussion to share their experience of myasthenia gravis and of zilucoplan. We will support them again for the second appraisal committee meeting. The meeting has not yet been scheduled by NICE. Members of the public will be able to register to observe the meeting on Zoom.

Support and information

Myasthenia gravis

Myasthenia gravis (sometimes abbreviated to MG) is a chronic, autoimmune condition that causes muscle weakness and excessive muscle fatigue. It is rare, affecting about 15 in every 100,000 people in the UK.

Research

We fund groundbreaking research to learn more about muscle wasting conditions and lead us to new treatments. We’ve already made advances that would have been unthinkable just 10 years ago, and we are determined to go even further and faster.

Our support services

We are here for everyone, but we understand that support isn’t one-size-fits-all. Speak to us. We can tailor our support to meet your unique needs.

Our helpline is open Monday-Thursday 10am-2pm.