In this interview, Vinciane Quoidbach, MSc, European Brain Council, Brussels, Belgium, and Bernadette Sheehan Gilroy, PhD candidate & rare disease advocate, Munster Technological University, Kerry, Ireland, discuss their collaborative research on the role of digital tools in supporting patients with rare brain disorders, focusing on conditions such as phenylketonuria (PKU). They emphasized the importance of co-creating digital health solutions with patient communities to ensure meaningful impact while maintaining a balance with in-person care to foster trust and avoid over-monitoring or discrimination. Ms Quoidbach highlights the importance of maintaining patient confidentiality with increased data sharing and discusses the need for continuous monitoring in PKU patients, which can be better facilitated using digital tools. Ms Gilroy comments on the need for psychological support for patients with PKU, as this is often overlooked. This interview took place at the European Academy of Neurology (EAN) Annual Meeting 2024 in Helsinki, Finland.
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