All the medical information on this site has been checked for accuracy by Alex, The Leukodystrophy Charity (Alex TLC) and medical experts (subject to specific wording for research summaries Our research summaries – Alex – The Leukodystrophy Charity), but does not replace advice given from medical professionals involved with your care. The information is for general use only and is not intended to provide personal medical advice or substitute for the advice of your medical doctor. Medical information changes rapidly and whilst Alex TLC makes every effort to update the content of the site, some information may be out of date. Remember to always seek the opinion of a medical doctor.
Any advice received directly from our Support Services team is based on staff lived experience and the knowledge gained from Alex TLC’s relationships with leukodystrophy specialists and affected families. This advice should not be perceived as medical advice.
There are a number of links from this website to sites maintained by third parties. These links are provided purely to assist you and in good faith. The presence of a link does not necessarily imply that Alex TLC endorses or supports those third parties.
Alex TLC cannot be held responsible for any damage or loss caused by any inaccuracy in this site, or in linked sites/pages.
Although we strongly recommend that the clinical information here is not seen as a substitute for getting professional advice directly from medical professionals, we take a great deal of care in creating our condition information.
All our condition information is produced using standards set out in the NHS Digital Service Manual.
The information is regularly reviewed – our Research Analyst proactively reviews the conditions on our website annually, e.g. to check for any new conditions. Additionally, doctors in our advisory board recommend updates whenever a development in the field requires it. View our advisory board here.
The condition information is also guided by a Steering Group – and we recruit focus groups of those affected by leukodystrophy, such as patients and carers, where appropriate. We survey our community regularly, and use their feedback to guide information and resource production and communication.
The charity’s Board of Trustees are updated on all our work through a quarterly CEO report, and the Board discuss any items of interest. Any significant changes to information structure or content are discussed via a proposal to the Board, with work continuing upon approval.
We also invite any users with queries or concerns about our information to get in touch via info@alextlc.org.
Our first practical information guides for Adrenoleukodystrophy (ALD), were published in 2016 using an experienced health information writer, overseen by our team of leukodystrophy clinical specialists. They can be viewed on our ALD and AMN condition pages. Our booklet for female carriers was commended at the 2016 British Medical Association Patient Information Awards.
A more recent accolade for our condition information is that NHS England’s Inherited White Matter Disorders Diagnostic and Management Service are directing their patients to refer to the condition information on the Alex TLC website – read more here.
