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Rare Ireland

@rareireland.bsky.social

Rare Ireland @rareireland.bsky.social · 28/02/2025

Rare Disease day 2025. Public awareness creates understanding of rare diseases, promoting change for the 300 million people worldwide living with a rare disease. @mediaplanetukie.bsky.social www.healthnews.ie/rare-disease...

healthnews.ie

Public awareness for people living with rare diseases

Increasing public awareness is essential for understanding the challenges faced by the rare disease community.

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Rare Ireland @rareireland.bsky.social · 21/02/2025

We are so disappointed to have to come to the decision to postpone the cold water dip on Sunday. We feel it was unsafe to have people, particularly children entering the water in the adverse weather conditions predicted in Dublin on Sunday. New date TBC soon.

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Rare Ireland @rareireland.bsky.social · 15/02/2025

Financially supporting families to receive private therapies eases financial burdens, helps children reach milestones and improves their quality of life. Rare Ireland is proud to have helped Christopher receive the intensive physio that has allowed him to walk #StrongerTogether

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Rare Ireland @rareireland.bsky.social · 05/02/2025

“We were happy to finally get a diagnosis but that quickly changed when we realised how rare his condition is. When Ciarán was diagnosed we were given very little information and were told ciarán may never crawl, walk or talk, so we celebrate every milestone” Ciarán Mum-Gillian

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Rare Ireland @rareireland.bsky.social · 29/01/2025

Celebrate Rare Disease Day 2025 with Rare Ireland by joining our cold water dips in Portmarnock or Spanish Point. Register on the following link forms.office.com/e/s5DZREYTxD

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