MINUTES OF THE PKUAI MEETING 7th October 2019 – The Hilton Hotel D2
Attendees : Karen Willetts, Fergus Woodcock, Pauline Woodcock, Karen Lavery, Bernadette Gilroy, Karen Philips, Killian Fitzgerald, Gavin O’Donnell, Colm Galligan
Patient registry: it was agreed that in order to improve PKU treatment and gain access to new and innovative treatments which are being developed, the PKUAI should create a Patient Registry. A registry has been developed and tested by 2 patients already who gave their feedback. All attendees last night will be given access to the registry so they can start inputting data. Information on the patient registry should be developed and shared amongst the PKU community in Ireland.
Actions: Colm to ask the registry developers to set up meeting attendees. Karen Willetts to write first draft on patient registry information sheet and forward to Emer O’Reilly
PKU research prioritisation workshop; PPI Ignite have awarded the PKUAI a grant to hold a workshop on where we as PKU patients would like to see research being carried out. It is hoped this will take place at the end of November. We discussed holding a social meal afterwards.
Actions: Karen Willetts to look for venue.
PKU Research participation; Please consider participating in this much needed Quality of Life Research, for info see http://pku.ie/do/ and also contact the Mater to sign up for the research taking place there.
Brexit: The PKUAI have contacted the manufacturers of PKU products which are necessary to adhere to PKU treatment. We have explained our concerns regarding Brexit and asked them to share with us any preparations they may be taking to ensure a continued and uninterrupted supply. We received responses to all our enquiries and will keep our membership updated on any necessary action you may need to take.
Access to treatment – lp foods and substitutes, medicines etc: Kuvan has been approved for reimbursement, see http://metabolic.ie/2019/06/kuvan-update/ for more info. Vitaflo’s sphere product is due to be approved shortly.
Actions: Colm to ask Cambrooke if there is any news.
Raising awareness of PKU– Living lens, Live Unlimited: Killian gave us some feedback on the Living Lens project in which he is participating. He makes videos which will then be edited to create a documentary about day to day living with PKU.
Gene Therapy Clinical Trial UK – Biomarin have submitted a clinical trial application in the UK for the investigation of gene therapy as a treatment option for PKU. This is an exciting development and we will be paying close attention to any developments in this area. For more information see
ESPKU Conference and lobbying EU parliament – Attendance at ESPKU was discussed and we wish them all a great trip. Karen Willetts is working with the ESPKU on establishing a cross party alliance on PKU in the EU parliament. Once MEPs have been invited to join we will ask our membership to contact their local MEP to support the alliance.
Upcoming events: Nutricia are holding an event on the 19th October and a Santa party on the 23rd Nov please contact firstname.lastname@example.org for info and to register. Vitaflo are having a cookery roadshow in Limerick, Cork, Dublin or Monaghan week starting 14th Oct. For info contact email@example.com