I was diagnosed in 2017 and was introduced to PNH Support through their patient meetings. I was keen to help the charity and volunteered my time. Since 2020 I’ve been a Trustee and have been able to support others affected by PNH through webinars, patient meetings, and representing the charity as a patient expert for several drug appraisals.
As a Patient Advocate I am keen for patient views and experiences to be central to developing the best care for those affected by PNH.