Why we should start seeing the 1 in 17 affected by a rare disease in Ireland

Laura Egan

Co-Founder, Rare Ireland

Elevate awareness of rare diseases in Ireland and across the globe. Learn how early diagnosis and lived experiences can make a difference, and join the movement.

Approximately 1 in 17 people are living with a rare disease in Ireland. Increasing awareness of rare diseases is necessary to reduce stigma and isolation, increase understanding and create a more inclusive community.

Why is rare disease awareness important?

There are up to 8,000 known rare diseases, affecting around 300,000 people in Ireland. These diseases are very often hidden disabilities, unknown to the general public. They affect our children’s teachers and classmates, our doctors and work colleagues. Rare diseases are all around us, but awareness is not.

Early diagnosis of rare diseases

Awareness of rare diseases is vital for a timely diagnosis. Better outcomes, in terms of improved care pathways, are more likely when patients receive an early diagnosis. These care pathways help those living with rare diseases reach their potential.

There are up to 8,000 known rare diseases,
affecting around 300,000 people in Ireland.

Lived experience informing care

Those who live with rare diseases often have the opportunity to link in with academics, medical professionals, industry and charitable organisations to create awareness based on personal experience. Shedding a light on rare diseases among medical professionals increases their awareness, allowing for more timely diagnosis and improved care.

How we raise awareness

As a rare disease charity, we are passionate about raising awareness. We advocate and incorporate rare voices in various projects we are involved in. Rare Ireland recently partnered with Rare Diseases Ireland in a public awareness campaign initiated and funded by Takeda.

The campaign is called ‘I Am Number 17’ and reflects the fact that 1 in 17 people in Ireland will, at some stage, be affected by a rare disease. The campaign, which launched on the 7th of February, features 17 changemakers, all living with rare diseases. Each changemaker has shared their story, putting recognisable and relatable faces to the statistic and putting the person in the spotlight, rather than their rare disease.

Rare is everywhere but, due to the lack of awareness and understanding, these conditions remain unknown to the general public. As a community, we advocate together, shedding light on the need for better awareness and understanding of rare diseases.