Helpline: Join our contacts list

5th February 2015


Can you provide support, advice and information to a newly diagnosed patient or family? We all know it can be a terrible and devastating time – when you first hear you or your son has a diagnosis with ALD or AMN.

Many patients and families get in touch with us every year – looking to speak to someone who has been through the same circumstances. It can help give newly diagnosed patients and families emotional well-being – hearing from someone who has been through it all before.

Can you be there for a newly diagnosed patient or family? Please get in touch to with your full name, address, telephone number and how ALD/AMN affects you, including as much detail as possible.


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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