Complete our surveys

Research underpins everything we do. Gathering information and feedback from beneficiaries helps to guide our plans for supporting you in the future.

Your participation in our surveys can help us to develop medical research, identify new treatment pathways, attract funding, and influence policy change in healthcare organisations.

We are always eager to learn what we’re doing well and what additional support you would like from Alex TLC.

Discover more and play your part!

Alex - The Leukodystrophy Charity


Annual impact survey
Our annual survey goes out to all our service users. It’s a chance for us to understand the specific needs of the leukodystrophy community and how our beneficiaries feel about the services we provide. Your responses help us to identify opportunities and assess the future needs of the people we support.

With the help of your honest feedback, we can make improvements to our services. Past surveys have led to an increase in home visits and additional peer support to help families cope. We have also gathered important data on how patients’ needs change as they progress to adulthood.

Our annual survey opens in autumn. Please look out for your invitation.

Take a look at the results of our 2018 impact survey.

Community Weekend evaluation
Everyone who attends our biennial Community Weekend event receives an evaluation survey to feed back on the success of the event. Your responses are vital. They enable us to gather valuable data and evidence to support future funding applications and influence NHS treatment policy.

Learn more about our Community Weekend.

Read the findings from our 2018 event.


“The weekend is a great event as it brings together families and professionals from all over the world to share information and support; peer support gained at the event is invaluable.”

Partner surveys
Occasionally we may share surveys on behalf of affiliated or partner organisations to support their research. Partner survey opportunities will be listed here.

Your feedback
We welcome your feedback on our services at any time.  Please get in touch to help us to be the best possible support to people and families with leukodystrophies.