The survey is now closed
We're excited to launch the Big WM Survey - a European-wide survey specifically aimed at WM patients, families, friends and carers to better understand the WM experience and identify key areas where we can improve care.
What is the survey?
The Big WM survey asks WM patients, families, friends and carers to share their experiences around diagnosis, treatment, living with WM and accessing information and support services.
The answers you provide will help us to identify gaps in care and services, as well as areas where we as a community need to focus to improve patient experience.
There are two surveys: one for WM patients, and one for families, friends and carers, acknowledging the differences in experience between the two groups.
The surveys were put together with feedback and input from both patients and families to ensure we're asking the relevant questions.
The survey is open for 2 weeks, closing on 21 August – to ensure your voice is heard, please fill it in as soon as possible!
Why Europe?
We all know WM is a rare disease, and we believe the more voices that speak up, the better. By broadening our Big WM Survey into Europe, we hope we’ll be able to demonstrate clear and common themes that can help us drive change for all WM patients, families and carers.
How will my responses help?
By adding your voice to the survey, you’ll be helping us to build a clear picture of what it’s like to be diagnosed and live with WM.
We’ll use the responses to put together a report. We'll then use this to discuss the outcomes with you, our patient and family community, to identify key priorities for the WM community.
Knowing priorities and having concrete statistics, means that we can have meaningful conversations with policy influencers and healthcare professionals, driving forward real change in how people affected by WM are cared for, and how they access treatment.
In short: by filling in the Big WM Survey, you will be driving change for everyone affected by WM.
What’s involved?
Simply click the link for patients or family, friends and carers, depending on your experience.
The surveys are longer than previous surveys we’ve sent out, having been fed into by patients and carers to ensure we’re capturing the full picture. The patient survey should take approximately 30minutes, whilst the family survey should take approximately 20minutes.
Every time you click to a new page on the survey, your answers will save, meaning you can leave and come back to finish it, if needs be.
All the data is anonymous. At the end of the survey, we do ask if we can use any statements you’ve made in campaign materials – either by name or anonymously – but this is completely voluntary.
The survey is open for just 2 weeks, closing on 21 August – so please fill in as soon as you can to ensure your voice is heard!