For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
PKUAI members briefed a great turnout of Ministers on PKU. Over 35 ministers attended for the presentation and gave much positive feedback. The key issues raised were cost & dietary therapy which were both answered at length by PKUAI.
Feedback from ministers: they were unaware of the reality of the disease, it’s effects and how currently ONLY dietary therapy is offered here in Ireland which is no longer the case world-wide as most other countries have adopted dietary therapy & Kuvan which offers people with PKU a dramatically improved quality of life.
Please see slides