Advocacy
This charity began as an advocacy campaign. In 2016, when the only dedicated sarcoma oncologist post at St Vincent’s University Hospital was left unfilled, a handful of patients formed the Sarcoma Action Group, took to the streets and secured a commitment from the Minister for Health to create a permanent specialist post. It then took four more years of sustained pressure before that post was filled in 2020.
That is where we come from, and advocacy remains one of the three pillars our work is built on.
What We Advocate For
Earlier diagnosis – sarcoma is too often found late. Every additional centimetre of tumour size at diagnosis is associated with a three to five per cent fall in survival. We work to raise recognition of sarcoma among GPs, allied health professionals and the public.
Clear pathways from diagnosis to treatment – we campaign to ensure that every person with a suspected sarcoma reaches specialist MDT-led care quickly, and that nobody is lost in the system between referrals.
Equal access, wherever you live – specialist sarcoma care is concentrated in Dublin and Cork. We advocate for patients in every part of the island to have equal access to specialist opinion, treatment and support.
Better transitions for young patients – we work with CHI, Childhood Cancer Ireland and the Irish Sarcoma Group to make the move from paediatric to adolescent and young adult services a managed handover rather than a cliff edge.
Access to new treatments and trials – we build relationships with clinicians and researchers in Ireland and internationally so that Irish patients can access the most up-to-date treatment available for their subtype.
The patient voice, at every table – we put lived experience at the centre of everything, and we ask that the health system does the same.
How We Work
Our Advocacy & Education Committee, chaired by a board member, leads this work. We collaborate with external stakeholders rather than working alone: the Irish Sarcoma Group, the national sarcoma teams at St Vincent’s University Hospital, Cork University Hospital, Cappagh and CHI at Crumlin, other Irish cancer charities, and the Sarcoma Patient Advocacy Global Network (SPAGN), of which we are a member.
Through SPAGN, more than 60 member organisations across five continents speak with a common voice for sarcoma patients worldwide. Our board members have represented Ireland at SPAGN conferences in Rome, Barcelona and, in 2026, Sweden.
Why It Matters
Rare cancers are easy to overlook. There are fewer patients to make the case, less research funding, fewer specialists and less public awareness. Advocacy is how a small community makes sure it is not forgotten — and it works. The specialist post exists. The GP flyer reached over 1,700 practices. The conversation about sarcoma in Ireland is louder than it was.
There is still a great deal to do.