Survey: What’s your Rare Reality? 

PLEASE, tell us your experience of healthcare while living with a rare condition in Ireland. We want to understand the challenges people living with rare conditions face accessing diagnosis, treatment & care.  With your help we can advocate for improved health services for everyone living with rare conditions in Ireland.



Update: the #Resolution4Rare campaign….

Over the coming weeks a UN Resolution for people living with rare conditions will be brought forward to the UN General Assembly for adoption. This Resolution aims to highlight the challenges that people living with rare conditions around the globe face in their daily lives and how the UN can help to promote equity and inclusion for the rare community. 

Please join the
#Resoultion4Rare campaign – show your support on social media OR write a letter to the UN OR join our campaign. More details at


Join our AGM, Tues Oct 19, 12 noon….

RDI’s Annual General Meeting is scheduled to be held on Tuesday Oct 19th at 12 noon via Zoom. If you would like to join us for this year’s AGM please register in advance to attend. 

Full details of the AGM, associated Information Pack and links for registration are available at

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