Information Standard: Last year, we... - Leukodystrophy Su...

Leukodystrophy Support

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Information Standard

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Last year, we decided to sign up to the Information Standard. The Information Standard is a certification scheme for all organisations producing health and social care information to patients and families.

You can find more about the Information Standard on their website: theinformationstandard.org

We believe by becoming certified, members of the public will feel more confident about our information resources, as a trusted and reliable source of information on ALD and AMN.

We have our full assessment on the 4th and 5th February. To make our case even stronger during the assessment, the assessor would like to have the opportunity to speak to some of our members who have been involved in the production of our information resources. This could be through attending a focus group, or even sending feedback on our information resources.

If you would be interested in helping our case, please send us your contact number and time of day we can contact you by email to info@aldlife.org.

ALD Life team

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If you thinking of helping us produce good quality information - this could be through attending a focus group, or even providing us with some feedback - You may be interested to read our policy statement and information production system, which outlines the processes and procedures we are fully committed to, in the production of good quality information. You can find the documents on our website: aldlife.org/about-us-what-w...

Regards,

ALD Life team

In May, we will be carrying out a review of our health and social care information to ensure they are up-to-date, reliable and relevant to current practices. However, to ensure our health and social care information is as user-focused as possible, we would like to ask you for your feedback. Please get involved by completing the survey here:

surveymonkey.com/s/MFJHSTG.