Local Changemaker with rare disease featured in ‘I Am Number 17’ campaign

Four-year-old Anna Fallon from Strokestown is one of the 17 Changemakers in the new ‘I am number 17’ campaign. She lives with a range of rare heart defects, collectively referred to as complex congenital heart disease (CHD). She is pictured here with her mother Fiona who also lives with CHD and is a passionate advocate. Anna Pic: Julien Behal

A new rare disease awareness campaign ‘I Am Number 17’ was launched last week in Dublin by Minister for Health, Stephen Donnelly.

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.

It features 17 ‘Changemakers’, individuals from all over Ireland living with a rare disease, who are sharing their stories to promote better understanding and awareness of rare diseases in Ireland.

One of the Changemakers featured is four-year-old Anna Fallon from Strokestown, Co Roscommon who lives with a range of rare heart defects, collectively referred to as complex CHD. Her mother Fiona is her voice in the campaign.

The campaign title, ‘I Am Number 17’, reflects the fact that 1 in 17 people in Ireland will be affected by a rare disease at some point in their lives. The campaign will spotlight and share the lived experiences of these individuals, putting recognisable and relatable faces to the statistics.

The Changemakers have been photographed for a very special exhibition by award-winning photographer Julien Behal which is now on public display at The CHQ Building in Dublin.

One of those featured is activist and sports journalist Joanne O’Riordan who said, “I am happy to lend my voice to the ‘I am Number 17’ campaign to raise awareness and increase understanding of rare diseases. As someone living with a rare disease, my journey in the world of sports has taught me the power of visibility and representation”.

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.

“Rare diseases can be devastating for patients and their families,” said Laura Egan, Rare Ireland. “The ‘I Am Number 17’ campaign is an opportunity to give a voice to those living with rare diseases and to raise awareness of the need for more research and support”.

At the 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.

For more, visit: www.iamnumber17.ie.