Posted by We commenced advertising The Lymphoma Coalition GPS last year when I became aware of the survey and the data gathered by the Coalition which is inspiring. This is not just another survey, the answers are analysed and presented to international haematology associations.
As a patient advocate to the European Haematology Association on creating new patient focused procedures, the information from this survey is vital. I have seen the information presented at various meetings throughout 2025 and now into 2026. The surveys have been conducted since 2008 having patients, caregivers and family take the survey helps guild the future of how patients are treated. In an age where AI is a part of life this survey traps so much necessary information. At an international level it gives guidance to help change National Health approaches to patients.
It doesn’t just stop at completing a survey, it digs deep into the differences geographically. Every stat is used to see where focus is important. I would have really enjoyed having this at my disposal when I was first diagnosed and even now with the access to this it has changed my overall view to survivorship.
All patients and caregivers worldwide are invited and encouraged to participate. The survey is open to all lymphoma subtypes, including Hodgkin lymphoma, to patients of all ages, and to caregivers, whose perspectives are essential for understanding real-world care pathways.
The Coalition regularly produce global, regional, and country-level reports based on the data collected. Importantly, countries that reach a minimum of 100 completed responses receive a country-specific report, highlighting local trends in diagnostic pathways, access to care, treatment burden, and system-level barriers. These reports can be used to:
Support clinical and outcomes research,
Inform service improvement initiatives,
Strengthen dialogue with health authorities and hospital leadership, and,
Provide robust, locally relevant evidence for advocacy, policy discussions, and academic work.
The survey is currently available in 21 languages, which helps ensure broad and inclusive participation.
This survey takes about 5 minutes to complete, each question have been carefully set to achieve a clear universal answer that is then used to make changes where possible. We are all aware that cancer and treatment effects everyone differently, so having as many people complete the survey allows us to target key issues and experiences, but cancer doesn’t just end after treatment – the studies into survivorship long term issues are now becoming a big part of research to make life better for patients, families and caregivers.
As our blog site has views not only from Ireland but Internationally we are asking all our HLD and CLL patients, survivors and caregivers to please complete this survey. The results will be part of a structured approach to all Oncology and Haematology panels worldwide. These results are also carefully viewed by leading pharmaceutical companies to improve treatment protocols.
Link to survey is below or click on the image
https://picker.fra1.qualtrics.com/jfe/form/SV_8nYLDY1XCnK6XQO
And a link below to The Lymphoma Coalition website:
As a patient advocate to the EHA for The Lymphoma Coalition the results of this survey will be present throughout 2026 and onwards. This is really a shout out to all fellow blood cancer victims to please complete this vital survey “Together we are stronger“
Hodgkin’s Lymphoma Awareness Ireland 