HCU
For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
Proposed agenda:
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
Charity status
Blood results
Quality assurance of protein substitute drinks
NSPKU conference
Rare disease day
IPPOSI events
Upcoming PKU events – NSPKU event in NI, International PKU day, NPKUA, Eurordis Conference.
AOB and set next date.