Dear Families,

The LSD Collaborative is a group of 11 charities supporting lysosomal disorders. They have prepared a survey for families, individuals and carers of the LSD Community living in the UK. It is designed to help them understand the quality care that you experience through your specialist hospital clinic, homecare, and other services. It is fully anonymised, so your identity will not be known by anyone receiving your response. The survey should take less than 20 minutes to complete, and the link can be found below:

https://www.surveymonkey.com/r/LSD_Charity

There is a printable version if you prefer to access the survey this way. Please contact admin@bdfa-uk.org.ukor joannanightingale@bdfa-uk.org.uk to be sent a copy.

The previous LSD Collaborative Community Surveys have had an excellent response, and the LSD collaborative were able to use the anonymised data to argue for improvements to the NHS care services enjoyed by our small community.

Thank you on behalf of the LSD Collaborative, and the LSD Community.