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New Survey Highlights the Challenges of People Living with Rare Cancer
Date:12/14/2009

The CURE Rare Cancer Survey, sponsored by Novartis Oncology, was conducted independently for CURE magazine among 1,365 of its readers living with cancer, to uncover challenges facing patients today and better identify their needs. The Leukemia and Lymphoma Society, the National Organization for Rare Disorders, CancerCare, the Life Raft Group and GIST Support International react to survey results in videos which are included at the bottom of this release.

East Hanover, NJ (PRWEB) December 14, 2009 -- A new national survey shows that nearly one in three patients with rare cancers – twice the number as those with more common cancers – say they received multiple misdiagnoses when their cancer was first discovered. This delay in receiving a final, correct diagnosis leaves the vast majority of patients with rare cancers (75%) feeling very frustrated (1a). The online CURE Rare Cancer Survey, sponsored by Novartis Oncology, was conducted independently for CURE magazine among 1,365 of its readers living with cancer to uncover challenges facing patients today and better identify their needs (1b).

If you or a loved one are among the nearly 35,000 adults in the US who have a rare cancer (2, 3), you are familiar with these challenges. Rare cancers are difficult to diagnose because symptoms can be absent, masked or mimic those of more common diseases while overall awareness, research and treatment options typically lag behind those for more common cancers (4).

According to the survey results, patients with rare cancers are also more likely than those with more common cancers to say they lack access to credible and reliable information, causing them to feel alone in dealing with their disease (1c). In fact, 74% believe they must be their own treatment champions (1d). Acting as their own advocates, patients with rare cancers are two times more likely to search for disease information on
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