For Rare Disease Day 2021, Rare Diseases Ireland is joining the global initiative calling on everyone to help raise awareness of the rare disease community and unite all of us by a chain of lights around the globe. The chain of lights across Ireland, will serve as a symbolic way to break the isolation of living with a rare condition, isolation that is heightened by the COVID-19 pandemic.
Anyone can contribute. The more homes, businesses, buildings and monuments that are illuminated the greater the impact we will all have. Our Light Up campaign will run throughout the last week of February, culminating on February 28, Rare Disease Day.
Share your photos on social media using the hashtags #LightUp4RD #RareDiseaseDay. Don’t forget to tag RDI in your posts!
The suggested colours are Blue, Pink & Green. If you have to choose one colour we suggest the colour blue.
Some examples of international locations lit up in the past…
Please let us know if you will light-up and if we can be of any help firstname.lastname@example.org
Did you know….?
• There are an estimated 300,000 people living with rare diseases in Ireland.
• At least 4% of children in Ireland are diagnosed with a rare disease, a life-long condition, by age 17.
• Approximately 2/3 of paediatric deaths in Ireland are associated with rare diseases.
• 72% of rare diseases are genetic in origin. A rare disease does not just impact the affected individual. A rare disease has implications for everyone in the immediate family unit and the wider family too; grandparents, aunts, uncles, cousins, second cousins.
• 70% of rare diseases are exclusively paediatric onset.
About Rare Disease Day
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. Rare Disease Day was first celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
About Rare Diseases Ireland (RDI)
Rare Diseases Ireland is the national alliance for voluntary groups representing people affected by or at risk of developing a rare disease. RDI represents the estimated 300,000 people living with rare conditions in Ireland. RDI’s vision is Equity for all people living with a rare disease – equitable access to diagnosis, treatment, health and social care, and opportunity. RDI work by advocating for, empowering and engaging people living with rare conditions, their carers and their families.
For more information or to make a donation go to www.rdi.ie/donate