Being diagnosed with a rare cancer can feel particularly isolating. Reliable information can be hard to find, treatment pathways can be complex, and connecting with someone who understands the experience isn’t always easy.

For people affected by cholangiocarcinoma in Ireland, Cholangiocarcinoma Ireland is working to change that.

We are delighted to welcome Cholangiocarcinoma Ireland as a new member of Digestive Cancers Europe (DiCE), bringing an important Irish patient voice and a strong focus on cholangiocarcinoma to our growing European community.

Born from lived experience

Cholangiocarcinoma Ireland was founded by patients and family members affected by cholangiocarcinoma who recognised a clear gap in information and support for people diagnosed with this rare cancer.

That lived experience continues to shape its work today.

The organisation provides patients and families with reliable information about diagnosis, treatment and specialist care, while creating opportunities to connect with others who understand what they are going through. It also advocates for greater awareness, improved access to appropriate care and treatment, and continued progress in cholangiocarcinoma research.

For someone facing a rare cancer, access to the right information at the right time can make a significant difference. Just as importantly, knowing that there is a community alongside you can make the experience feel less isolating.

Shining a light on cholangiocarcinoma

Although Cholangiocarcinoma Ireland is a relatively young organisation, it has already built a strong presence through awareness and community activities.

One of its most visible initiatives is Light Ireland Green, organised around World Cholangiocarcinoma Day. Landmarks, public buildings, workplaces and communities across Ireland are encouraged to turn green, creating a powerful visual reminder of a cancer that remains unfamiliar to many people.

The campaign goes beyond visibility. It creates opportunities to talk about symptoms, earlier diagnosis, access to specialist expertise, treatment options and the experiences of people living with cholangiocarcinoma.

The organisation has also brought its message directly into the community through participation in the VHI Women’s Mini Marathon in Dublin, bringing people together to raise both awareness and funds for its work.

That community spirit has inspired individual efforts too. In 2026, Éanna Ryan completed the Marathon des Sables, an extraordinary endurance challenge across the Sahara Desert, in memory of his uncle Iggy, who died following a cholangiocarcinoma diagnosis. His Run for Iggy campaign helped raise public awareness of the disease while raising funds to support the work of Cholangiocarcinoma Ireland.

These activities share something important: they take a rare cancer many people have never heard of and make it visible.

Bringing the Irish patient voice to Europe

Joining DiCE creates an opportunity to bring the experiences and priorities of people affected by cholangiocarcinoma in Ireland into a wider European conversation.

Rare cancers present particular challenges. Patient communities are smaller, specialist expertise may be concentrated in only a few centres, access to innovative treatments and clinical trials can differ between countries, and awareness among both the public and healthcare professionals can be limited.

These are challenges that cannot always be addressed within national borders alone.

Through DiCE, Cholangiocarcinoma Ireland will connect with patient organisations across Europe, exchange experiences and best practices, contribute to European advocacy, and collaborate on shared priorities affecting people with digestive cancers.

For DiCE, its membership strengthens the representation of cholangiocarcinoma and other rare digestive cancers within our network.

The knowledge, lived experience and determination of organisations working directly with patients are essential to ensuring that our advocacy reflects the realities people face across different European healthcare systems.

Stronger together

Every patient organisation joining DiCE brings experiences that can help the wider community learn, advocate and create change.

Cholangiocarcinoma Ireland brings a particularly important perspective: the experience of building a community around a rare cancer and turning lived experience into information, awareness and advocacy.

We look forward to working together to strengthen the voice of people affected by cholangiocarcinoma, improve awareness and help ensure that patients and families across Europe have access to the information, expertise and support they need.

Welcome to DiCE, Cholangiocarcinoma Ireland. 💚