Sarcoma Cancer Ireland
Striving to empower those affected by sarcoma, offering vital support, education, and advocacy to enhance their journey and overall wellbeing.
From Advocacy to Action
Sarcoma Cancer Ireland is a registered charity led by sarcoma patients and their families. We exist to make sure that nobody in Ireland faces a sarcoma diagnosis without support, information and someone in their corner.
Sarcoma is rare. Around 300 people are diagnosed in Ireland every year, roughly 30 of them children, and there are around 100 different subtypes. That rarity is the reason this charity exists: it means fewer people have heard of it, fewer clinicians encounter it, diagnosis is often delayed, and patients and families can find themselves searching for information and for others who understand.
How We Began
In June 2016, the contract of the only dedicated sarcoma oncologist at St Vincent’s University Hospital in Dublin was not renewed, and the care of every sarcoma patient at the hospital passed to oncologists who did not specialise in the disease. A small group of patients came together as the Sarcoma Action Group and began to lobby the Minister for Health to reinstate a specialist post. Through public protest and media attention, they secured a meeting with the Minister and, on 8 July 2016, a commitment to create a new full-time post for a medical oncologist specialising in sarcoma.
It took four more years of pressure on the Minister, the HSE and the hospital before that post was filled in September 2020. Throughout those years the group kept campaigning — and kept supporting newly diagnosed patients, because there was nobody else doing it.
During the pandemic, patients and carers who had connected online began to talk about turning the support group into something more permanent. The conversation started with a simple wish list: education, advocacy, support. Those three words became the pillars the charity is built on. Sarcoma Cancer Ireland was granted charity status by the Charities Regulator in February 2024.
Who We Are
Our Board of Directors is made up of sarcoma patients, survivors and carers. Every one of them has first-hand experience of what a sarcoma diagnosis does to a family and of what it takes to navigate the Irish health system. Our volunteer network stretches across every county, north and south.
We receive no government or HSE funding. Everything we do is funded by donations from the public. Board members and volunteers are not paid, and every euro raised goes into the services, awareness work and advocacy set out in our strategic plan.
What We Do
Today we provide free one-to-one counselling, monthly online patient and bereavement support groups, in-person peer support groups around the country, financial grants for patients and families, a free and confidential Support Line, an annual Patient Information Day, and education campaigns aimed at both the public and the medical community. We represent Irish patients internationally through the Sarcoma Patient Advocacy Global Network (SPAGN) and work alongside the Irish Sarcoma Group and the national sarcoma teams.
From a protest group of a few determined patients to a national cancer charity, we are proud of how far we have come — and clear about how much is still to do.