GIST Support International

1
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

2
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

3
GSIs Services

• 2 listservs hosted by Lsoft
• GIST list (almost 600 members)
• Grief and loss list (anticipatory bereavement)
• Phone pals
• Website www.gistsupport.org
• Scientific summaries with references
• Medical literature updates every few days
• Topical QA contributions by experts on issues
• Savvy Patient navigating GIST treatment
• Psycho-oncology Place essays, stories
• Photo Gallery members, tumors, and experts
• Bulletin board forum

4
GSI is a growing community

• Since 2003 grown to largest GIST group
• Website has gt300 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

5
Whats next for GSI?

• We will ask for your opinions to share globally
  in more QA 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 (www.gistinfo.org).

6
Sharing Compassion and Knowledge Pathways to Hope

• And how the GSI subscribers feel . . .