Rare Disease Patient Experiences Survey 2015

8th September 2015

Rare Disease UK (RDUK), has launched a new survey into patient experiences of rare (including genetic) and undiagnosed conditions to get a full, up-to-date picture of their experiences. more…

Team ALD Life Parchuting Stars

8th September 2015

We want to give a huge thank you to Ryan Long, Susanne O'Brien, Martin Miller and Graham Penrose for jumping out of a plane (strapped to an instructor of course) to raise thousands more…

You and Your GP

The other day I was discussing with a service user, the fact that some of our GP’s have very little knowledge of ALD/AMN, and how frustrating this can be. I am lucky because my GP admits that I know more…


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. ...

View on Facebook