Vicky McGrath CEO of Rare Diseases Ireland spoke to Tommy Marren, about the experiences of people living with rare diseases and the challenges they face when navigating healthcare in Ireland.
RDI are running a national patient reporting experience study.The aim is to develop a questionnaire to capture the experiences of people living with rare diseases when accessing and navigating health services. RDI are inviting people living with a rare disease, and family members and carers, to complete the questionnaire and share their experiences.
You can check out the study at https://rdi.ie/prem/
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