We are delighted to support this campaign. Expanded newborn screening will save the lives of many Irish children #GetRareAware

The “Get Rare Aware” campaign is urging the government to expand newborn screening. NBS is vital for the early detection and treatment of many rare diseases. The launch starts with a webinar for Dublin/midlands areas Register on this link bit.ly/GRA-Dublin-Mid… Rare Diseases Ireland

#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.

Great initiative, well done Rachel Crowley Rare Disease Clinical Trial Network, Ireland Dr Suja Somanadhan RAiN Rare Diseases Ireland and everyone involved #ThinkRare

We are thrilled to announce our first Gala Ball. Tickets on sale soon #SaveTheDate

Thank you Pituitary Ireland for inviting us to be part of your conference today. Well done on a very successful event 👏

We need a permanent home for our genetics services Rare Diseases Ireland RARE Ireland #genomics

From cloudy days to golden rays! 🌤️ Today, the sun's shining bright, a stark contrast to last month's sea swim with colleagues at RARE Ireland. 🌊 What a difference a month makes! Here's to embracing the sunshine while we keep raising awareness of #RareDisease .☀️

Lucy's (11-year-old) enthusiasm is extraordinary at the #RAiN #CRAG ! 'Be the Voice, not the ECHO' sounds like a powerful message for children's rights and participation in #RareDiseases . Dr Carleen Walsh RARE Ireland Rare Diseases Ireland Prof AJ McKnight Ombudsman for Children UCD Research

Some of the many buildings beautifully lit up for #RDD2024

Thanks Sara Nolan for your kind words 🥰

Feb 29th, the rarest day of the year. On #RDD it’s only right that we share these young ladies. Our girls will never fully understand the value of what has come from their stories and the supports now available to families but they continue to embrace their rarity.

We are a day early in Athlone. Thank you Iarnród Éireann our bridge is beautiful as always. #RDD2024 #LightUpForRare #GlobalChainOfLight #StrongerTogether

Thank you KasiaGoljanekWhysall and all who braved the cold with you in Galway yesterday in aid of Rare Ireland and to raise awareness of #PLWRD #DipForRare #StrongerTogether

Well done to Takeda Pharmaceutical, Rare Diseases Ireland, RARE Ireland, those living with #RareDisease and the photographers, for bringing awareness through the impactful #IAmNumber17 campaign in Stephens Green. A powerful initiative showing that rare isn't always as rare as we think! 🌟

Great day in Portmarnock today for our #RDD cold water dip. Thanks Rachel Crowley, Virgin Media News NFIreland and Rory's Stories for all the support #StrongerTogether #RDD 2024

To celebrate Rare Disease day and the one and only Niamh, we will dip in the Atlantic tomorrow morning at this very beach, welcome to join :) 1 in 17 people are affected by rare disease RARE Ireland vatpasealliance #RareDiseases #1in17

Thank you to everyone who supported our cold water dip in Spanish Point, Co Clare today. Thank you especially to all who braved the cold to support and raise awareness of Rare Disease Day and #PLWRD in Ireland. Can’t wait to do it all again tomorrow in Portmarnock.

🌊 Join us this weekend at Spanish Point, Co. Clare (Sat @ 1pm) & Portmarnock Beach, Co. Dublin (Sun @ 2pm) to cheer on swimmers supporting Rare Disease Day! Let's make waves and raise awareness for our rare community! 🏊‍♀️ #RareDiseaseDay RARE Ireland