PKU expert Dr Francjan Van Spronsen, head of the division of Metabolic Diseases at University Medical Centre Groningen, The Netherlands and Chair of the Scientific Advisory Committee E.S.PKU has provided his support for Kuvan for PKU patients in Ireland. See…
Please see a letter of support from the E.S.PKU espku letter of support signed
IRISH, EUROPEAN AND INTERNATIONAL BACKING FOR PKU CAMPAIGN SECURED PKU FAMILIES PLEA TO MINISTER FOR HEALTH & HSE TO GRANT FUNDING CURRENT PKU TREATMENT IN IRELAND DOES NOT MANAGE DISEASE The PKU Association of Ireland (PKUAI) has received a boost…
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…
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…