1. Introducing Sarcoma UK Roger Wilson

2. First steps … Roger Wilson – patient (dx 1999) –Journalist Sarcoma UK launched as newsletter –First edition April 2003 –Distributed by specialist treatment units –7 th edition now published –Today - contact with over 400 patients –Contact with every specialist clinician

4. First steps … Contact other patients Sarcoma UK launched as newsletter –First edition April 2003 –Distributed by specialist treatment units –6 th edition now in preparation –Today - contact with over 250 patients –Contact with every specialist clinician Needed an organisation

5. Our objectives To provide information and support to sarcoma patients, their carers and families To support the development of a coherent national network of specialist centres to treat sarcoma in line with the best identified clinical practice To support research which leads to better treatment and better outcomes for sarcoma patients

6. … and so … Sarcoma UK launched as company –January 2004 –Launch website – summer 2004

7. www.sarcoma-uk.org

8. … and so … Sarcoma UK launched as company –January 2004 –Launch website – summer 2004 –Create email support group – summer 2004 –Represent patients in NHS –Encourage professionals to create British Sarcoma Group –Build links with other patient organisations in UK and elsewhere

9. … and it grew … Help develop guidelines Develop range of patient information leaflets

10. In preparation: Gynaecological sarcomas Retroperitoneal sarcoma Clinical research Tumour specific information All leaflets involve patients, doctors and nurses in their development

11. … and it grew … Help develop guidelines Develop range of patient information leaflets Provide email support –Patients share, listen and INFORM –Build hope – encourage each other –Sources of advice – eg second opinions Help represent individual patients British Sarcoma Group Conference

12. Successes Educational grants for publishing from Novartis and Pharmamar Support of both patients and the clinical community Recognition from the larger cancer charities NICE Service Guidelines Supporting patient appeals against treatment funding refusal by NHS BSG Conference 2005, upcoming 2007

13. Tomorrow … Support Conticanet – pre-clinical research Address disparities in treatment Encourage implementation of guidelines Launching associated charity –Contribute research resorces –Help create self-support groups –Improve sarcoma capability of existing helplines Raise awareness with general practitioners Create a cohort of expert patients

14. We work with … iSPAN International Sarcoma Patient Advocate Network

15. Our ambition … … to help change curves like this

16. Roger Wilson roger@sarcoma-uk.org