Man with rare condition issues plea to HSE to fund drug access
17 June - 11 minsLunchtime Live were contacted a few days ago by a concerned uncle who shared the deeply personal story of his nephew Barry, who has a rare genetic condition called Von Hippel-Lindau syndrome, which causes tumours to grow uncontrollably in his body. To make matters worse, a new drug used to treat the condition called belzutifan isn’t available in Ireland, despite being allowed in the UK and Northern Ireland. Barry joined Andrea to discuss the impact his condition has on his life and what access to the Drug would mean for him.
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