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New Survey Highlights the Challenges of People Living with Rare Cancer
Date:9/17/2009

onic myeloid leukemia (CML) and gastrointestinal stromal tumors (GIST):
 
  • The CML Alliance (www.CMLAlliance.com) and GIST Alliance (www.GISTAlliance.com) programs provide valuable information to people with CML and GIST such as information about the rare cancers, treatment goals, the importance of regular testing and check-ups and patient assistance programs.
  • CML Earth (www.CMLearth.com) and GIST Earth (www.GISTearth.com) are social networking communities designed to help patients feel less alone by providing a portal for them to privately share, support and connect with others like themselves. Patient discussion panels show that networking is important to patients with rare cancers who are looking to connect with people who have had similar experiences5.

"These survey results show that patients with rare cancers have an urgent need for comprehensive, accurate information," said John Hohneker, MD, Senior Vice President, US Clinical Development and Medical Affairs, Novartis Oncology. "Our online resources provide patients with CML and GIST accessible, reliable and multi-dimensional support so they can make informed decisions about their treatment options."

Detailed results from the CURE Rare Cancer Survey were published in CURE's fall 2009 i
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