EAN 2024 | The work of the PKU Association of Ireland

Bernadette Sheehan Gilroy, PhD candidate and rare disease advocate, Munster Technological University, Kerry, Ireland, shares an overview of the work of the PKU Association of Ireland (PKUAI). It is a voluntary organization that aims to provide support to families affected by phenylketonuria (PKU). However, she stresses the challenges that come with a lack of formal funding, resources, and key stakeholder involvement. This interview took place at the European Academy of Neurology (EAN) Annual Meeting 2024 in Helsinki, Finland.

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