This year Rare Disease Day 2020 is on Saturday, February 29th – a very rare day indeed!
Building on 12 years of success, in this the 13th year of celebrating Rare Disease Day, we are in a new phase, seeking increased equity for the rare disease community. The campaign message “reframes” perceptions of what it means to be ‘rare’ so that no one is left behind. We must re-double our efforts to show that rare isn’t scarce, rare isn’t infrequent, rare isn’t remote.
It is estimated that there are at least 300,000 individuals in Ireland living with at least one of the up to 8,000 described rare diseases.* In fact, there are more than 300 million patients (a figure approaching the population of the United States, the 3rd most populous country in the world), each supported by family, friends and a team of carers, that make up the rare disease community worldwide.
Although you may not know it, you probably already know some of the 1 in 16 people affected by a rare disease in Ireland. We all need to understand that people living with a rare disease in Ireland face inequitable access to diagnosis, treatment and care. It’s time to show your support for people living with a rare disease!