For those with HCU - Experience of diagnosis and patient satisfaction https://www.hcunetworkaustralia.org.au/experience-of-diagnosis-and-patient-satisfaction/
We have finally reached the point where the decision makers (the HSE) will decide on whether or not to cover the cost of Kuvan. Now is the time to raise this issue with your local TDs. Please find attached a template letter you can use to help write your own letters.
This can also be emailed to you by request to email@example.com
The main focus is to highlight: 1) The need for Kuvan by requesting TD raise issue and ask question 2) Why is it available throughout Europe but not available in Ireland?
Please Support & join together our call to action for PKU Community
Please post OR email a copy of the template or a personal letter to your local TD’s this week!!!!
Wherever possible ask friends, family, loved ones, people ‘who understand your real, day to day struggle’ to send one too to their local TD’s too.
Share the letter & request for them to share on their Facebook and/or all social media pages too.
Please email firstname.lastname@example.org to let us know who you have written to. This way the PKUAI may follow it up with your TD