Rare Disease Day 2023
A Disease is Rare when it affects fewer than 1 in 2000 people. 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 on 28th February, or 29th February when we have a leap year.
This year RDI are asking people to Raise A Toastie to Raise Awareness for those living with a rare disease in Ireland. Huntington’s Disease Association of Ireland will be supporting the campaign on social media etc. so please consider sharing your toastie on social media using #RareDiseaseDay and #RaiseAToastie or if you prefer you can send a picture of your toastie to us at firstname.lastname@example.org and we can share on social media. See further info below:
EURORDIS-Rare Diseases Europe is a non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.
For information about their work see Home - EURORDIS