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Supporting someone living with myasthenia gravis – share your experience to further new treatment decisions

2 June 2023

This year, the National Institute of Health and Care Excellence (NICE) is appraising three potential treatments for myasthenia gravis to decide whether they should be recommended for use by the NHS. We will be engaging in the appraisal processes, working with our entire community and other patient organisations to ensure that the views and experiences of people affected by myasthenia gravis are taken into account.

Reviewing the impact of myasthenia gravis on caregivers

An important factor in NICE’s decision making process about whether  to recommend a treatment is the extent to which it could  positively impact on the  quality of life of the caregiver as well as the   person living with a condition. NICE defines a caregiver as someone who supports a family member, partner or friend with needs that result from living with a health condition or a disability.   

We are working with the manufacturer of one of the three treatments due for appraisal this year,  to build a clearer picture of the impact that supporting someone living with myasthenia gravis has on family members, partners and friends. Looking at the impact of myasthenia gravis; not the impact of a specific treatment. As this work is about the caregiver and not the specific treatment, we will be able to use these findings in our engagement with NICE on all three treatments – and any future treatments that are developed.

Get involved in our project and receive an amazon voucher

We are gathering insights for this project via short 15-20 minute telephone interviews. Participants will receive a £25 Amazon voucher in consideration of their time.

If you support someone living with myasthenia gravis and would like to take part, please use this link to get involved. The deadline for completion is 9 June 2023.

All information gathered through the project will be fully anonymised and no personal participant details will be shared with the treatment manufacturer.

We are working with the Research Institute for Disabled Consumers to conduct the interviews, and they will be in touch with participants during the week beginning 12 June 2023. We are looking to gather views from around 20 people, so sharing your details does not guarantee participation.

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