Wenesday 19th May 2021: Message from Metabolic Unit, Temple St : Kuvan PPN High-tech drug prescriptions including Kuvan are being affected by the cyber attack on the HSE. The normal process in prescribing Kuvan through the HSE high-tech hub is…
The PKUAI ‘In Conversation series' launched on Friday 9th October with guest speaker Krystal Suchocki, PKU Adult & Registered Nurse with Classical PKU discussing: Living with PKU and Palynziq® for the past 10 years. To watch the video please click https://youtu.be/rArtXIO-TVg…
Please find attached information on a study taking place in the Mater. It is hoped that the study will help the NCIMD-Adult Service Team better understand the needs of their patients and facilitate ways to improve delivery of the service.…
Community survey to assist shaping new PKUAI website The PKU Association of Ireland (PKUAI) is a small voluntary group set up to support patients and carers of patients with PKU in Ireland. The PKUAI are refreshing the existing web-site creating…
Dear adults with PKU (16 years plus) and parents/caregivers of adults with PKU (16 years plus), We would like to invite you to complete a short (approximately 10 minutes) survey to ascertain if there is a need for new treatment options…
PKU & Gene Therapy Market Research A research study is seeking PKU Adults & PKU carers / parents interested in taking part in market research about Gene Therapy for PKU. The study aims to better understand the lived experiences, challenges and…