Irish Rugby Star James Lowe Champions Rare Disease Awareness with New Book Launch

Ireland and Leinster rugby international James Lowe has officially launched the 'I Am Number 17' book, sharing his personal journey with Juvenile Idiopathic Arthritis whilst championing 17 individuals living with rare diseases across Ireland. The launch comes following last month's publication of the new National Rare Disease Strategy 2025-2030.

The launch took place at Dublin's Mansion House, where Lowe revealed how his teenage diagnosis with Juvenile Idiopathic Arthritis affected his sporting ambitions. The book chronicles the experiences of 17 'Changemakers' representing a wide range of age groups, diseases, ethnicities and regions across Ireland.

The 'I Am Number 17' campaign was jointly launched by Rare Diseases Ireland, Rare Ireland, and Takeda Ireland in February 2024 to increase understanding of what it is like to live with a rare disease in Ireland. The campaign highlights that one in 17 people are affected by rare disease, challenging the misconception that these conditions are uncommon.

James Lowe explained his motivation for supporting the campaign:

"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."

The rugby international continued:

"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 book features the personal stories and experiences of the 17 Changemakers and is brought to life through photography by award-winning photographer Julien Behal. It includes a special foreword from James Lowe.

The launch arrives at a significant moment for Ireland's estimated 300,000 people living with rare diseases, following the publication of the National Rare Disease Strategy 2025-2030.

Shane Ryan, General Manager at Takeda Products Ireland Ltd, said:

"At Takeda, we are thrilled to see the continued momentum of the 'I Am Number 17' campaign. It has been a privilege to work alongside incredible partners, Rare Diseases Ireland and Rare Ireland, to bring this book to life. We are especially grateful to the 17 Changemakers for sharing their stories and to James Lowe for his wonderful support of this campaign."

Laura Egan from Rare Ireland commented:

"At Rare Ireland, we know first-hand the power of connection. Every day, we see how sharing stories can lift the weight of isolation for families living with rare conditions. The 'I Am Number 17' campaign gives those families a national platform, ensuring that the challenges and triumphs of our community are seen and understood. We are proud to stand alongside the 17 Changemakers and James Lowe in amplifying the voices of those living with rare diseases in Ireland, and making sure that the rare disease community in Ireland is not forgotten."

Vicky McGrath, CEO of Rare Diseases Ireland, said:

"The 'I Am Number 17' campaign has changed the conversation about rare diseases in Ireland. By putting real people's experiences at the centre of our campaign, it breaks down barriers, challenges misconceptions, and sparks the understanding needed to drive real change. As we move forward with the campaign, our goal is to keep building momentum for change. We urge policymakers, healthcare providers, researchers and the public to get involved in this awareness raising journey. A simple way to start is by asking: 'Is it rare?' That question can open the door to greater understanding and better support and care."

In the European Union, a rare disease is defined as one that affects no more than one person in 2,000. Between 6,000 and 8,000 different rare diseases affect an estimated 30 million people in the EU.

The campaign is supported by 16 patient organisations and features the 17 Changemakers, putting recognisable and relatable faces to the statistics of rare disease in Ireland.

For more information about the campaign visit www.iamnumber17.ie.