Thank you for taking part in this survey. It will take about 30 to 45 minutes to complete.
Purpose and content of the survey
This survey is being conducted to better understand lysosomal acid lipase deficiency (LAL-D) and its impact on the lives of patients and their carers. The anonymised results of this survey will be shared with Alexion Pharmaceuticals in order to inform its submission to the National Institute for Health and Care Excellence (NICE), the organisation that recommends whether medicines - including those for rare conditions - should be available on the National Health Service (NHS) in England.
How to answer the survey
Please answer the questions as best you can. If you are the parent of a child affected by LALD, please answer the questions as best you can on behalf of the child. You only need to answer questions you feel comfortable answering. If you do not wish to answer a particular question, skip to the next question. Any personal information you provide will remain confidential; only anonymised information will be shared with Alexion Pharmaceuticals.
By clicking on the button you are confirming that you have LAL-D and providing consent for your anonymised information to be used as described.