PKUAI has been made aware of many patients' concerns regarding the lack of action on implementing the Kuvan care pathway, and following advice from metabolic consultants, we have written to seek an urgent update on the availability of Kuvan from…
CALL TO ACTION: KUVAN As you are aware the situation with Kuvan in Ireland requires action. Can you please make known your dissatisfaction by contacting your local representatives. You can find their contact details at https://www.whoismytd.com It would be helpful…
Members of the European Parliament Cross-Party Alliance on PKU and the European Society for Phenylketonuria (ESPKU), are holding the inaugural meeting of the Alliance in the European Parliament on 3 March between 14.00 and 16.00. Your MEP will have received…
PKUAI are holding a research prioritization workshop followed by a meal at the Clayton Airport Hotel on the 30th November at 4pm. There are limited places and they will be allocated on a first come first served basis. RSVP is…
Please see attached statement from the European Society of PKU https://www.espku.org/2019/11/05/treatment-for-adult-metabolic-patients-is-insufficient/ ESPKU-Statement-on-Transition-and-Adult-Care Nov 19