Rare Disease Day 2025
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A Disease is Rare when it affects fewer than 1 in 2000 people. 1 in 17 people in Ireland live with a Rare Disease.
Huntington’s Disease is a rare brain disease which affects approximately 1,100 people in Ireland, with 750 people experiencing symptoms and 400 who carry the HD gene. It also impacts the 3000 family members who are at risk of developing HD or who care for loved ones.
The Huntington's Disease Association of Ireland is a member of Rare Diseases Ireland which is a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare diseases. Rare Diseases Ireland (RDI) join with other rare disease groups around the world to mark Rare Disease Day which falls on 28th February, or 29th February when we have a leap year.
On February 26th HDAI attended the Oireachtas All Party Group Meeting on Rare Diseases to mark Rare Disease Day. People living with rare disease and patient group representatives were delighted to meet Minister for Health Jennifer Carroll MacNeill (left with Vicky McGrath RDI CEO) and the many other TDs and Senators who attended the event at Leinster House. Deputy Padraig O'Sullivan (Below right) hosted the event.
