All the updated news related to rare disease

All the news related to rare disease updated in real time

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Local News

'Get Rare Aware': Carlow Oireachtas members warned about rare diseases

Rare Diseases Ireland (RDI) have launched their 'Get Rare Aware' campaign, which is highlighting the challenges facing people living with rare diseases in Ireland, including in Carlow. ‘Get Rare Aware’ campaigners are calling on Oireachtas members ...

07 Jul 2023 at 19:53

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New campaign calls on politicians in Carlow to expand Ireland’s newborn screening programme

Rare Diseases Ireland (RDI) this week launched its 2024 Get Rare Aware campaign to bring together politicians, medical experts and people living with rare diseases, including in Carlow, to call for the urgent expansion of newborn heel prick ...

19 Apr 2024 at 21:00

National News

Only 13% of people aware of rare disease could correctly identify condition

Only 13% of people who claim to have an awareness of the term “rare disease” could correctly identify a condition, a survey has revealed. The results of the survey reveal a disparity between awareness and understanding of rare diseases in ...

07 Feb 2024 at 15:16

National News

Expansion of newborn screening scheme ‘frustratingly slow’, official says

The Health Minister was unable to provide a date for when additional rare diseases will be added to a newborn screening programme, after an advocate expressed “disappointment” with the rate of progress. Minister Jennifer Carroll MacNeill ...

27 Aug 2025 at 15:57

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