Between May and August 2021, the CLL Advocates Network (CLLAN) launched its global survey to explore CLL support provision & needs worldwide, available resources and unmet needs. The objective of this survey was to systematically capture what is happening “on the ground”, learn what organisation offers for Chronic Lymphocytic Leukaemia (CLL) patients and get a better understanding of the impact of COVID-19 on service delivery in different countries.
The survey provided evidence of priorities for support groups and advocates and helped shape the content for CLL Horizons 2021. Survey responses provided conference content priorities and aided with shaping particular sessions. Partly, the results of the survey will be used to build CLLAN´s new Resource Hub, a global directory of CLL support provision and resources that we plan to launch in late autumn 2021.
Patient organisations with CLL / SLL in their remit were allowed to participate in this survey that was available in 7 languages.
The findings of the survey will be presented at our upcoming CLL Horizons conference. A final report will highlight areas of good practice that can be celebrated and shared. From the survey findings strategies, practical recommendations and calls to action have been derived that will also be presented at the confernece. We furthermore plan to submit posters and abstracts of the survey findings to the main scientific conferences. You can have a “sneak peek” of emerging trends in our interim snapshot.
Thanks to all those groups who took the time to complete this survey and for helping identify advocacy needs of worldwide organisations providing support to CLL patients and sharing good practice.