GIST Support International  Nearly 600 members in 25 countries  Patients and caregivers  Family and friends  Physicians, nurses, researchers  All focused on GIST…. People helping each other “Sharing compassion and knowledge: pathways to hope…”

Mission and Philosophy  Support –from shock of diagnosis to “informed patient” –sharing experiences, stages of understanding  Education –explaining facts, new findings –steering patients to treatment by sarcoma experts  Empowering patients to seek the best care  Open access  Open communication  Volunteers only: no paid personnel

GSI’s Services  2 listservs hosted by Lsoft –GIST list (almost 600 members) –Grief and loss list (anticipatory & bereavement)  Phone pals  Website –Scientific summaries with references –Medical literature updates every few days –Topical Q&A contributions by experts on issues –Savvy Patient: navigating GIST treatment –Psycho-oncology Place: essays, stories –Photo Gallery: members, tumors, and experts –Bulletin board forum

GSI is a growing community  Since 2003 grown to largest GIST group  Website has >300 visitors daily (10/2005)  Achieved NPO status in 2005 –Allows interactions with pharma, associations –Grant from Pfizer to improve our website –Grant from Novartis to help sponsor PBS television documentary on targeted therapy –Plan for language translations on website

What’s next for GSI?  We will ask for your opinions to share globally in more Q&A write-ups on our improved website.  We will ask research questions…  We will promote clinical trials…  We will summarize research for patients and educate them in treatment options.  We will support research fundraising via GIST Cancer Research Fund (

Sharing Compassion and Knowledge: Pathways to Hope And how the GSI subscribers feel...