Public awareness for people living with rare diseases

Laura Egan

Operations Manager, Rare Ireland

Increasing public awareness is essential for understanding the challenges faced by the rare disease community.

Awareness helps to foster acceptance and reduces the stigma that is often associated with rare diseases.

Rare disease campaign promotes understanding

I Am Number Seventeen is a public awareness campaign initiated and funded by Takeda Products Ireland in partnership with Rare Ireland and Rare Diseases Ireland. It launched in February 2024 and aims to raise the voices of those living with rare diseases, increasing understanding of what it’s like to live with a rare disease.

Highlighting lives of people with rare disease

I Am Number Seventeen showcases 17 individuals living with rare diseases, highlighting their unique lives, personalities and accomplishments. This initiative tells the stories of these changemakers, focusing on their experiences as individuals rather than solely on their rare diseases.

Awareness of rare diseases is
imperative to promote change.

The campaign launch

I Am Number Seventeen was officially launched in February 2024 by Stephen Donnelly, the previous Minister of Health, and featured a beautiful exhibition of photos of the 17 Changemakers. The images were captured by photographer Julien Behal, giving a recognisable and relatable face to the statistics. These photos have since appeared in several venues around the country, continuing to share the message that ‘it’s not rare to be rare.’

The importance of public awareness

Awareness of rare diseases is imperative to promote change, increase understanding of rare diseases and create a more inclusive community. I Am Number Seventeen puts rare diseases in the spotlight and emphasises that 1 in 17 people will, at some point in their lives, be affected by a rare disease. It currently takes, on average, five years to get an accurate rare disease diagnosis. Awareness of rare diseases is vital for more timely diagnoses, in turn improving care pathways for people living with rare diseases.

I Am Number Seventeen is a positive three-year campaign aimed at highlighting rare diseases. It has united a community to advocate for increased public awareness. Rare Ireland is honoured to partner in this campaign and contribute to its success. We look forward to the next phase.