Bringing MPN Patient Voices to the Clinical Trial Table

We're pleased to share that three members of our COMPASS (Community for MPN Awareness and Shared Support) community recently took part in a Patient Advisory Board for Silence Therapeutics, contributing their perspectives to an MPN clinical trial.

(From left) Nurul Farhah Binti Zainudin (haematology nurse), Khairullnizam Bin Ishak (patient), and Zuraini Binti Ariffin @ Kamal (carer), each brought something different and valuable to the table. Together, they represent the full spectrum of the disease experience — from diagnosis and daily management to the clinical frontline.

Sejati Initiative was glad to support this process: helping identify the right people, facilitating the discussion, and making sure the voices in the room reflected the realities of living with and managing MPN — not just the science behind it.

Too often, patient engagement in clinical development is centred in high-resourced settings. Opportunities like this need to be accessible to communities in the Global South, where disease burden is high but representation in trial design remains low.

We're grateful to Silence Therapeutics for making space for these voices, and we welcome more opportunities like this.