For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
Cambrooke introduction and update on their application to HSE
The process low protein products have to go through to be added to LTI/GMS scheme
Update on new products added onto LTI/GMS
Kuvan update and plan next steps
Meeting with Minister for Health
Quality assurance of protein substitute drinks
Rare disease day
Upcoming PKU events – NSPKU event in NI, International PKU day, NPKUA, Eurordis Conference.
AOB and set next date.