Mayo 'changemaker' shines light on her experience of living with a rare disease

A new rare disease awareness campaign entitled ‘I Am Number 17’ was launched today in Dublin by the 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 Lucy Beckwith, who is based in Mayo and lives with cystinosis.

Speaking today, Minister Donnelly said: “I am delighted to launch the 'I Am Number 17' campaign. This is an important step in raising awareness of rare diseases and recognition that while individually rare, collectively these conditions have significant impact in Irish society.”

He added: “I would like to commend the 17 changemakers here today who are wonderfully captured in the photo exhibition. Their individual experiences are so important in fostering a better understanding of these conditions which are far more common than many may think.”

The campaign title, 'I Am Number 17', reflects the fact that one 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 will be on public display from tomorrow (Thursday, February 8) at The chq Building in Dublin. This exhibition is designed to celebrate the changemakers at the heart of this campaign.

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.

“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."

Speaking at the launch, Shane Ryan, general manager at Takeda Ireland, said: “At Takeda, we are committed to improving the lives of patients with rare diseases. The 'I Am Number 17' campaign is an important step in raising awareness of rare diseases and we were proud to partner with RDI and Rare Ireland on this initiative.”

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.”

Vicky McGrath, CEO of Rare Diseases Ireland, added: “Rare diseases are a significant public health issue in Ireland. The 'I Am Number 17' campaign shines a light on the lived experiences of those living with rare diseases. It provides not just insight into the experiences of the 17 changemakers, but also tells us about their hope, dreams and aspirations. There is much we can learn from them.”

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.

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 about the campaign, how to get involved and learn more about rare diseases, visit www.iamnumber17.ie.