MDI have been invited to prepare a patient submission as part of the drug reimbursement assessment process for two treatments for generalised myasthenia gravis (gMG); zilucoplan (Zilbrysq) and rozanolixizumab (Rystiggo), both manufactured by UCB Pharma.
This submission is an important opportunity for people living with MG, as well as their families and carers, to share their experiences and help decision makers better understand the day-to-day realities of living with the condition.
The submission captures information across different aspects of life, including daily activities and independence, emotional wellbeing, relationships, financial pressures, experiences with current treatments. This information will be gathered through a survey prepared and distributed by MDI.
As part of this work, Dympna Mulroy, MDI Research Officer, would welcome the opportunity to speak with people living with MG to hear about their experiences and help ensure that the survey reflects the issues that matter most to those living with the condition.
If you would be willing to have a short, informal conversation with Dympna before 25 November, please contact her by:
Email: mdiresearch@mdi.ie
Thank you for considering taking part.