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Sarcoma UK
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Sarcoma UK is an internet site and resource for sarcoma patients. They offer information about sarcoma intended to help patients, families and friends understand the different kinds of sarcoma. They do not attempt to duplicate information that is available on other websites. They provide a list of web links to appropriate pages about sarcoma. To access information about GIST, click on ‘GIST’ on the left hand menu. This section contains information about GIST, web links, questions you may wish to ask your doctor about GIST and information about Glivec.
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GIST Support International (US)
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‘Sharing compassion and knowledge…pathways to hope.’ GIST Support International (GSI) is dedicated to the education and support of patients affected by gastrointestinal stromal tumours and their family and friends. This is a comprehensive site with an extensive list of links to the latest news and information about GIST. On the top left hand side of the screen there is the ‘Learning Centre’ this section contains ‘Ask the Professional’ and ‘GIST in the News’ which includes latest releases about drugs and drug developments. Under the heading ‘Education Materials’ there is a link to publications about GIST in medical literature. Also included are webcasts and slides shows, nutritional information and links to other websites of relevance.
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GIST Cancer Research Fund
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GCRF (GIST Cancer Research Fund) is about paving the way toward finding a cure for GIST. The mission of GCRF includes creating funding to support research, to provide patients and practitioners with more information, to support patients and families coping with GIST, to provide information to the international community, and to influence legislature in the US to implement policies. When you access this site if a box titled ‘Enter Network Password’ appears, click on the cancel button. You do not require a password to access the ‘Patient Area’. The ‘Patient Area’ is located on the left hand side menu under GCRF Information Centre. The section contains patient stories, information about international clinical trials and current research in the GIST field.
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Life Raft Group (US)
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Life Raft Group is an international support organisation for people with gastrointestinal stromal tumours – ‘ensuring that no one has to face GIST alone’. The mission of the group is to ensure the survival of GIST patients whilst maintaining their quality of life. The group devotes itself to four major programme areas: ‘Research and Treatment Surveillance’, ‘Information and Support’, ‘Patient Outreach and Assistance’, and ‘Advocacy’. The about GIST section contains information about diagnosis, genetics, and expert opinions. There is a separate accessing treatment section containing information about current treatment options, what you should know and clinical trial information. The coping with cancer section contains practical information and patient stories. Under the heading “Frequent Topics’ the frequently ask questions (FAQ) section contains GIST information in French, Hungarian, Japanese, Spanish, Hebrew, Dutch, Italian, German, Chinese, Farsi, Polish, Portuguese and Norwegian. The main sponsors for this site are the pharmaceutical companies Amgen and Novartis.
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