Irish rugby star James Lowe has swapped the pitch for the podium, launching a powerful new book that lifts the lid on what life is really like for people living with rare diseases in Ireland.
The Leinster and Ireland winger, who himself was diagnosed with Juvenile Idiopathic Arthritis (JIA) at just 14, unveiled the I Am Number 17 book at the Mansion House — a collection of deeply personal stories and striking portraits of 17 people affected by rare conditions.
Lowe told attendees he wanted to break the sense of isolation many young people feel after a life-changing diagnosis.
“Having been diagnosed with JIA when I was 14, 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,” he said.
“As a sports-mad teenager, not being able to play the games I loved was really tough… but slowly I got back to the sports I loved and now I am playing rugby for Ireland.”
The I Am Number 17 campaign — launched last year by Rare Diseases Ireland (RDI), Rare Ireland and Takeda Ireland — aims to raise awareness that rare disease is not as uncommon as people think, with one in 17 people affected in Ireland.
Central to the campaign are the “17 Changemakers”: people from across the country living with a rare disease or caring for someone who is.
Their diverse experiences form the heart of the new book, which features photography by award-winning photographer Julien Behal and a foreword by Lowe.
Vicky McGrath, CEO of Rare Diseases Ireland, said the campaign has “changed the conversation” about rare diseases.
“By putting real people’s experiences at the centre, it breaks down barriers, challenges misconceptions, and sparks the understanding needed to drive real change,” she said.
The book’s release follows the Government’s new National Rare Disease Strategy 2025–2030, which aims to improve the lives of an estimated 300,000 people in Ireland living with rare conditions.
More information about the campaign can be found at www.iamnumber17.ie.
