I encourage those of you who are lymphoma patients (or former patients) to take a survey sponsored by the Lymphoma Coalition. Here's the link to the survey:
http://www.lymphomacoalition.org/index.php/global-patient-survey
The Lymphoma Coalition is a world-wide organization, made up of lymphoma advocacy groups from around the world, representing 35 countries. The U.S. is well-represented, with seven different organizations as members. The Coalition works to raise awareness and improve understanding of lymphomas, ensure best practices in lymphoma management, and encourage the creation of new advocacy groups.
Part of that mission is achieved through their survey, which they conduct every two years. By looking at the results, and comparing results to those from previous years, they can get a better sense of how they improve on their mission.
The 2010 survey results are available on their website. Fascinating results, particularly on the lack of information and knowledge that people have about their lymphoma. I forget, sometimes, that not everyone is so aware of what's going on with their disease. I guess that's because (1) I'm so hyper-aware of it myself, and (2) I'm involved with a support group of other hyper-aware people. So it's good to see that more work needs to be done in helping lymphoma patients understand their choices, and encourage them and their doctors to do more.
Friday, April 20, 2012
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