Were you aware?

300,000

People in Ireland are living with a rare disease, impacting a quarter of all families⁶

Rare diseases are conditions that affect a relatively small number of people individually, but together they are far from rare. There are more than 6,000 known rare diseases, and while each may affect only a handful of people, collectively they impact around 300 million people worldwide, including an estimated 300,000 people in Ireland. The term “rare” can be misleading – individually rare, collectively common. Behind the label ‘rare diseases’ are millions of individuals, families and carers whose lives are affected every day. The statistics tell the real story: rare diseases are a major public health issue that deserves greater awareness, research and investment. #GetRareAware

This website and the Get Rare Aware public awareness campaign are brough to you by Rare Diseases Ireland, the national alliance for rare disease patient organisations in Ireland.

Three quarters of rare diseases
are genetic in origin⁷

Over 6,000 diseases
are classified as rare⁸

Children account for
50% of all people living with a rare disease⁹

11.8% of children living with a rare disease will die
before the age of 18¹⁰

Nearly 60% of all
children who die have
a rare disease¹¹

Children living with a rare disease spend 25 times
more time in hospital¹⁰

49% of people living with a rare disease receive inappropriate care, treatment or surgery due to misdiagnosis¹¹

62% of people living with a rare disease have delayed access to care, treatment or surgery due to misdiagnosis¹¹

66% of people living with a rare disease report symptoms that are wrongly attributed to another disease¹¹

Were you aware?

300,000

People in Ireland are living with a rare disease, impacting a quarter of all families6

Three quarters of rare diseases are genetic in origin7

Over 6,000 diseases are classified as rare8

Children account for 50% of all people living with a rare disease9

11.8% of children living with a rare disease will die before the age of 1810

Nearly 60% of all children who die have a rare disease11

Children living with a rare disease spend 25 times more time in hospital10

49% of people living with a rare disease receive inappropriate care, treatment or surgery due to misdiagnosis11

62% of people living with a rare disease have delayed access to care, treatment or surgery due to misdiagnosis11

66% of people living with a rare disease report symptoms that are wrongly attributed to another disease11