Practical Information Leaflets: It is finally here!

20th April 2015

Practical Information
It has been a while. But it has been all worth it. We’ve finally rewritten and published our Practical Information Leaflets series. We’ve been working really hard to make sure we can create a leaflet to guide patients and families through health and social care options available to them – and follow our rigorous processes under the Information Standard quality mark.

We think they are great. What do you think? To download a leaflet:
Practical Information for Males with Symptomatic ALD
Practical Information for Males with Asymptomatic ALD
Practical Information for Men with AMN
Practical Information for Women with AMN
Practical Information for Female Carriers of ALD

If you would like a hard-copy, please send us an email to with your name and address, and we will send you a leaflet as soon as we receive our leaflets in the office. Please also send us your feedback to
Finally – we have to say a huge thank you to everyone who participated in the user feedback last year. We couldn’t have made these fantastic leaflets without your input – so thank you (please feel free to pat yourself on the back). A huge thank you also to Jo Whelan – who kindly wrote these leaflets on a voluntary basis. She did an amazing job.


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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