Policy & Submissions
Our advocacy is grounded in the experience of patients and families in Ireland, and in the published clinical evidence on how sarcoma outcomes improve. This page sets out the positions we hold, the work we have published, and the organisations we work through.
Our Policy Positions
Specialist care for a rare cancer – every person with a suspected sarcoma should be discussed by a specialist sarcoma MDT before biopsy and before surgery. Sarcoma outcomes are consistently better when patients are treated in high-volume specialist centres.
Timely imaging and referral – urgent MRI within two weeks for adults and 48 hours for children where sarcoma is suspected, and prompt referral to the National Sarcoma MDT where imaging is suggestive.
Sustainable specialist staffing – the events of 2016 to 2020 showed how fragile a service becomes when it depends on a single post. We continue to advocate for adequate, permanent specialist staffing in sarcoma services.
Recognition of sarcoma in primary care – sarcoma should be part of undergraduate and continuing professional education for GPs and allied health professionals.
A managed transition for young patients – young people moving from paediatric services to adolescent and young adult or adult services need a planned handover, not a discharge and a new referral.
Psychosocial and financial support as part of care – counselling, peer support and practical financial help are not optional extras. We provide them because the system does not, and we advocate for that to change.
Published Work
Strategic Plan 2026–2028 – launched on Rare Disease Day, 28 February 2026, setting out our priorities across support, education and advocacy for the three years ahead. Available to download.
Annual Report 2024 – our first full annual report following the grant of charity status, including our statement of public benefit, governance arrangements and financial review. Available to download.
Diagnosing Sarcoma: A Guide for GPs (2025) – developed with the sarcoma clinicians at St Vincent’s University Hospital and distributed to more than 1,700 GP practices. Available to download, with printed copies free on request.
Who We Work With
Sarcoma Patient Advocacy Global Network (SPAGN) – we are a member of this global network of more than 60 sarcoma patient organisations across five continents. Our board members have represented Ireland at SPAGN conferences in Rome, Barcelona and Sweden.
Irish Sarcoma Group – we work alongside the ISG, including co-hosting our annual Patient Information Day with clinicians and researchers.
National sarcoma teams – St Vincent’s University Hospital, Cork University Hospital, Cappagh National Orthopaedic Hospital and CHI at Crumlin.
CHI and Childhood Cancer Ireland – on improving the transition from paediatric to adolescent and young adult services.
Irish Cancer Society – we advocated for the development of dedicated sarcoma information for patients.
Working With Us
We welcome approaches from policymakers, clinicians, researchers and other patient organisations. If you are consulting on cancer policy, rare disease policy or service design and would like input grounded in the experience of Irish sarcoma patients, please contact info@sarcoma.ie.