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New Survey Highlights the Challenges of People Living with Rare Cancer

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 online than those with more common cancers (1e).

Online resources are increasingly available for those with rare cancers. Novartis Oncology developed programs to help patients become educated on two rare cancers mentioned by survey respondents – chronic myeloid leukemia (CML) and gastrointestinal stromal tumors (GIST):

  • The CML Alliance and GIST Alliance 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 and GIST Earth 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 experiences (5).
“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 issue available at The magazine and Web site also includes the first-ever ‘A Patient’s Guide to Rare Cancer,’ which is designed to address the issues raised in the survey and to help patients communicate more effectively with healthcare providers about their cancers.

“Surrounding patients with many levels of support can help them feel less alone in their disease management,” said Debu Tripathy, MD, CURE Editor-in-Chief. “Giving patients with rare cancers a better understanding of their disease can ease their frustration.”

The complete CURE Rare Cancer Survey report is available online at:, and

The Leukemia and Lymphoma Society, the National Organization for Rare Disorders, CancerCare, the Life Raft Group and GIST Support International discuss CURE magazine’s RARE Cancer Survey (click on individual video links):


(1.) CURE Media Group. CURE Rare Cancer Survey Report, May 15, 2009.
(1a.) Section 1, page 13, table 3
(1b.) Methodology, page 2, lines 1-6
(1c.) Section 7, page 20, table 1, line3
(1d.) Section 7, page 20, table 1, line 4
(1e.) Section 7, page 20, table 1, line 9
(2.) National Cancer Institute Web site. Common Cancer Types Fact Page. Available at National Cancer Institute Web site.
(3.) American Cancer Society: Cancer Facts and Figures 2009. Atlanta, GA: American Cancer Society, 2009. Available at American Cancer Society Web site.
(4.) National Institutes of Health, Rare Diseases Clinical Research Network Fact Sheet. Available at National Institutes of Health Web site.
(5.) Panel Intelligence, Discussion Panel Transcript: Journey of Survivorship – Round 2. Prepared for Novartis, October 2007.

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