17 ‘Changemakers’ – individuals from all over Ireland living with a rare disease – are sharing their stories to promote better understanding and awareness of rare diseases in Ireland.
Part of the newly launched campaign, ‘I Am Number 17’, Corkonians Joanne O’Riordan, who lives with Tetra-amelia Syndrome and Ausra Buinauskaite, who lives with Gaucher disease, are supporting the awareness campaign.
LIVING WITH A RARE DISEASE
The campaign title reflects the fact that 1 in 17 people in Ireland will be affected by a rare disease at some point in their lives.
Spotlighting and sharing the lived experiences of these individuals, putting recognisable and relatable faces to the statistics, activist and sports journalist Joanne O’Riordan outlines what having a rare disease means.
“As someone living with a rare disease, my journey in the world of sports has taught me the power of visibility and representation. We are not defined by our conditions, but they do shape our experiences. It’s time that the rare disease community sees themselves reflected on and off the field. I hope by sharing our stories, those living or caring for someone with a rare disease feel seen, heard, and supported.”
The campaign was initiated and funded by Takeda, a global leader in pharmaceutical research and development, in partnership with Rare Diseases Ireland (RDI) and Rare Ireland.
PUBLIC AWARENESS
According to the National Rare Diseases Office (NRDO), rare diseases affect around 6% of the population in the Republic of Ireland, accounting for at least 300,000 individuals.
At the campaign launch, the results of a survey to assess knowledge and awareness about rare diseases among the Irish public were made public. The results reveal a striking disparity between awareness and understanding of rare diseases in Ireland. While 84% of respondents claimed to have some awareness of the term ‘rare disease,’ only 13% of those who indicated awareness of the term could correctly identify a condition classified as a rare disease.
Despite these misunderstandings, the survey uncovered an encouraging trend: a clear call for increased attention to rare diseases, with 82% of all respondents agreeing that these conditions need to be taken more seriously. Additionally, 69% expressed an interest in learning more about rare diseases.
For more information, visit: www.iamnumber17.ie
