UK: Sarcoma UK

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Contact Information

Sarcoma UK
49-51 East Road
London
N1 6AH
United Kingdom

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Web: http://www.sarcoma-uk.org

 

Contact Person

Roger Wilson (Honorary President)
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Lindsey Bennister (CEO)
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Organisation Profile

Sarcoma UK is a patient-led UK registered charity with the objectives of informing and supporting patients, working with clinical professionals and healthcare administrators to improve outcomes for patients, funding and supporting research, and acting as an advocate for patients. Sarcoma UK is a partner in the Conticanet research collaboration and provides secretariat support to the British Sarcoma Group.

Sarcoma UK is based in London and has a small full-time staff led by Ms Lindsey Bennister, CEO. It is funded through grants, donations and by the efforts of a band of wonderful fund-raisers. We provide online and written information covering all sarcomas, including GIST (which is the commonest sarcoma).

Working with our specialist clinical centres we are developing a network of regional support groups associated with the approved sarcoma specialist treatment centres in the UK. The current plan is that in the coming months these support groups will be reinforced through an expert patient programme.

We provide online and written information covering all sarcomas, including GIST. We work closely with GIST Support UK and the Bone Cancer Research Trust, particularly providing advocacy on behalf of patients seeking reimbursement for high-cost treatments through the various structures of the NHS. We also work with charities who focus on children and teenagers with cancer, and with Macmillan Cancer Support, the UK’s largest support charity.

Among other activities we work with the National Cancer Research Institute to ensure patient involvement in research, ranging from reviewing proposed clinical studies to membership of trial management teams. We are also working with the National Institute for Health Research so that our own research programme is nationally accredited.

Sarcoma UK is a co-founder member of Sarcoma Patients Euronet (SPAEN), and a partner in the Conticanet research collaboration.

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