The following patient-led groups work with experienced medical GIST experts and the pharmaceutical industry. Together they already support and provide information to several hundred people affected by GIST:

• The Life Raft Group USA (www.liferaftgroup.org), and (www.globalgist.net)
  
• Das Lebenshaus, g.e.V (www.daslebenshaus.org) , for the German-speaking community,
  
• GIST Support International, (www.gistsupport.org)
  
• Rarer Cancers Forum, http://www.rarercancers.org.uk/
  
• GIST Support UK (ie ourselves)
  

Their main areas of activity are:

• PROVIDING INFORMATION – up to date, reliable and understandable information
• PROVIDING A MEETING PLACE – exchange of knowledge and experience between the medical profession, patients and those who care for them
• GENERAL SUPPORT – helping patients by reducing the feelings of isolation
• LOBBYING – representation of patients’ interests to all concerned with the health systems

• Fewer people suffer or die from the effects of GIST
• Those affected receive expert care and support at all stages
• Patients and their carers – despite GIST – can lead a life worth living.

(Last updated February 2006)