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rareireland.bsky.social
Rare Ireland
@rareireland.bsky.social
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...
Public awareness for people living with rare diseases
Increasing public awareness is essential for understanding the challenges faced by the rare disease community.
www.healthnews.ie
February 28, 2025 at 5:27 PM
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.
February 21, 2025 at 9:22 PM
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
February 15, 2025 at 4:28 PM
“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
February 5, 2025 at 9:44 AM
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
January 29, 2025 at 9:02 PM