The European Parliament Cross-Party Alliance on PKU held the inaugural meeting of the Alliance in the European Parliament on 3 March 2020. ESPKU is in charge of coordinating the European Parliament Cross-Party Alliance on PKU, of which the PKU Association of Ireland is an active member.
The following Irish MEPs have already agreed to support the Alliance: Frances Fitzgerald, Clare Daly, Mairead McGuinness, Maria Walsh, Barry Andrews, Matt Carthy (while he was an MEP). Deirdre Clune and Sean Kelly also supported the March meeting. The support of Irish MEPs is critical as the Alliance can help ensure that individuals affected by PKU and their families and carers can have life-long access to the services and support that they require to best manage the condition and its consequences in their daily lives. Needless to say, massive thank you to those of you who brought the attention of their MEP to the Alliance and, of course, the MEPs who have pledged their support.
The inaugral meeting brought together relevant stakeholders across the new EU institutional landscape to take stock of the current state of play of unmet needs in PKU, and has helped to shape and determine the agenda and future work programme of the Alliance.
PKU is beginning to be recognised by policymakers as a condition which needs resolute attention. However, continued efforts are required to anchor it as a public health priority on the EU and national policy agendas, and to further explore all avenues for policy action to improve the lives of affected individuals across all Member States. This is the very reason why the Alliance was created: to unite and mobilise MEPs and relevant stakeholders; raise awareness of and propose and advocate specific (policy) initiatives to better address unmet needs in PKU across the EU – in alignment with rare disorders – in order to improve the day-to-day situation and quality of life of those affected by PKU and their families. The need for a more permanent platform to drive such policy action was noted in the wake of a successful and well-attended policy roundtable held in July 2018 and supported by 11 MEPs at the time.
For further information on The European Parliament Cross-Party Alliance on PKU please click here