A book showcasing the stories and portraits of 17 people living with a rare disease across Ireland has been officially launched, showing that rare disease isn’t as uncommon as many believe, in fact 1 in 17 are affected by rare disease.
Officially launching the ‘I Am Number 17’ book, Irish rugby international James Lowe, spoke about his own experience living with Juvenile Idiopathic Arthritis (JIA).
The ‘I Am Number 17’ campaign was jointly launched by Rare Diseases Ireland (RDI), Rare Ireland and Takeda Ireland in February 2024 to increase understanding of what it is like to live with a rare disease in Ireland.
At the forefront of the campaign are the ‘17 Changemakers’ – 17 people living with a rare disease or supporting someone who has a rare disease, from across Ireland. The 17 Changemakers – including Áine from Waterford, Aursa from Cork and Danny from county Tipperary – represent a wide range of age groups, diseases, ethnicities and regions across Ireland, their stories and unique experiences are integral to helping promote better understanding of rare diseases.
The book chronicles the story and impact of the campaign to date, as well as featuring the personal stories and experiences of the 17 Changemakers. The book is introduced by a special foreword from James Lowe and is brought to life through photography by award-winning photographer, Julien Behal.
Speaking at the launch at the Mansion House in Dublin, ‘I Am Number 17’ campaign ambassador James Lowe, said it was an honour to stand with the Changemakers
“When I was asked to support the ‘I Am Number 17’ campaign, I didn’t hesitate. Having been diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was 14 years old, I know what it feels like to not understand what’s happening inside your own body and to feel like no one else quite understands. I wanted to share my story to help children and families going through that same feeling of isolation and uncertainty.
As a sports-mad teenager, not being able to play the games I loved was really tough. It took time, treatment and patience, but slowly I got back to the sports I loved and now I am playing rugby for Ireland.”
The launch of the ‘I Am Number 17’ book comes at a timely moment following last month’s publication of the new National Rare Disease Strategy 2025-2030, a big step forward in improving the lives of the estimated 300,000 people living with rare diseases in Ireland.
For more information about the campaign, how to get involved and learn more about rare diseases, visit www.iamnumber17.ie
