While WM is a rare disease, from time to time, medical professionals and experts in the research community take note of the need for more research with regards to WM, and ask for our assistance. 

In many cases, this involves something as simple as completing a questionnaire or survey about our condition. Listed below are several opportunities for us to be "heroes" who help lead to exciting research findings in the future.

DFCI/GHOBRIAL TISSUE BANK STUDY - Dr. Irene Ghobrial of the Dana Farber Cancer Institute has applied for and received a grant to crate a tissue bank for WM and make it available to IWMF research grantees and other researchers.  Part of her project also involves collecting demographic and medical history information from WM patients via a questionnaire.  To find out more and complete a questionnaire, please click here.  Patients can go directly to the questionnaire online at:  https://redcap.partners.org/redcap/surveys/?s=7JxV9u
(first posted May, 2012)

CART-WHEEL - based in Australia, but global in nature.  It is the first ethically-approved website for consumer-driven data for rare tumours or rare subtypes of common tumours.  In addition, they have partnered with the IWMF and the WM community in Australia (WMOzzies) to tailor the questionnaire to also help better understand the nature of WM.  For more information, and to participate, click here or go directly to their website at http://www.cart-wheel.org.

(first posted May, 2012)

LYMPHOMA COALITION -  the coalition is a global network of worldwide non-profit lymphoma patient organizations (including the IWMF) with a vision to free the world of lymphoma (http://www.lymphomacoalition.org).  Every two years, they solicit patients to provide information via questionnaires.

• For 2012, a Global Patient Survey was made available to patients, and was set to close on May 11, and the Lymphoma Coalition plans to publish the results by the time of Lymphoma Awareness Day on September 15, 2012.  Following are links that were provided to take folks to the survey in their language of preference:
  • English: https://www.research.net/s/english_english
  • French: https://www.research.net/s/french_francais
  • German: https://www.research.net/s/german_deutsch
  • Italian: https://www.research.net/s/italian_italiano
  • Russian: https://www.research.net/s/russian_russian
  • Spanish: https://www.research.net/s/spanish_espanol
  • Portuguese: https://www.research.net/s/portuguese_portugues

(First posted May, 2012)