News

Lymphoma Coalition Global Patient & Caregiver Survey – Please Help
09 Jan, 2020
The Lymphoma Coalition is a global network of non-profit lymphoma patient organizations, including the IWMF, with a vision to free the world of lymphoma. Every two years, the Lymphoma Coalition conducts a global survey of lymphoma and CLL patients. This year’s survey seeks to gather information regarding barriers to treatment and quality of life that can then be used for comparative analysis based on the type of lymphoma.
The 2020 Survey is your opportunity to share your WM experience to help patient organizations plan support services and advocacy efforts, both globally and locally.
This year, there are two additional features to the survey:
·       a survey for caregivers
·       a series of WM-specific questions (We qualified for having WM-specific questions due to the large number of respondents we have had in the past – so keep participating!)
For examples on how the data from the 2018 Global Patient Survey was used, you can view:
·       The 2018 global and by-country reports(link is external)
·       2018 Report Card on Lymphomas: Spotlight on the Patient Experience(link is external)
·       Waldenstrom’s macroglobulinemia subtype report(link is external)
·       Fear of Cancer Recurrence report(link is external)
Please participate by filling out the survey online at www.lymphomacoalition.org/gps2020(link is external) by 11 March 2020. Once there, you will be asked whether you’re a patient or a caregiver, and will be directed to the appropriate questions for your status.
The survey is available in 19 languages and will take approximately 20-35 minutes to complete for a patient, and 10 minutes for a caregiver.
The survey is anonymous and all information is confidential. Participants can withdraw from participating at any point during the survey, but only up to the point of submission. You can find out more about past surveys at www.lymphomacoalition.org.(link is external)
In 2018, WM’ers made up 12% of the 6,600 respondents from around the world, while in 2016, we made up 10% of the 4,000 respondents that year. Let’s see if we can do better than that this time around, and continue to ensure that our WM voices are heard!