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LSD Collab Survey 2024

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.

Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease